Mental disorders are one of the greatest public health challenges in terms of prevalence, burden of disease and disability and they cause major burden to economies, demanding policy action. More than one in six people across EU countries had a mental health issue in 2016, equivalent to about 84 million people. Moreover, in 2016, 165,000 deaths were attributed to mental and behavioural disorders, including self-harm, in EU.The burden of mental illness in the European WHO region is estimated to account for 14.4% of years lived with disability (YLDs) and 5.8% of disability-adjusted life-years (DALYs), placing thus mental illness as the second biggest contributor to YLDs after musculoskeletal disorders and as fourth in terms of DALYs in the WHO European region. Total costs pertaining to ill mental health have been gauged at more than 4% of GDP- or over 600 billion- across EU in 2015.
Many European countries have in place policies and programmes to address mental illness at different ages. Nevertheless, much more can be done to manage and promote mental health. Delivery of MH care services takes various forms across EU. Some countries still rely on big psychiatric hospitals, while others are delivering the care for MH mostly in community settings.This need for prioritizing mental health becomes more imperative, in light of the ongoing COVID-19 pandemic. Converging evidence substantiate emerging mental health needs and difficulties faced by the mental health care systems to tackle them.
Building upon 15+ years of EU efforts including the Joint Action for Mental Health and Well-being the European Framework for Action and the EU Compass, the Members of the SGPP have selected two best practices (i) the Mental health reform in Belgium and (ii) Suicide prevention form Austria to be implemented during the new Joint Action on mental health, with an aim to extend the benefits of these best practices to participating countries.
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For many years tobacco consumption has been considered the single most important cause of preventable morbidity wordwide. Efforts to reduce the devastation of tobacco related death and illness in the EU, consist of the Tobacco Products Directive (TPD), the Tobacco Advertising Directive (TAD) and the Framework Convention on Tobacco Control (FCTC) from WHO.
The general objective of the Joint Action on Tobacco Control 2 will be to provide support of the implementation of TPD and TAD.
The specific objectives of the program are:
1. To ensure appropriate coordination and evaluation
2. To support dissemination of information to the target groups
3. To integrate the JATC results into national policies
4. To facilitate the exchange of good practices between Member States in order to improve implementation of the Tobacco Products Directive (TPD) and related implementing and delegated acts in a number of areas of tobacco product and e-cigarette regulation, including laboratory capacity, analysis and assessment.
5. To ensure greater consistency in the application of the TPD to ensure a fair internal market for tobacco and related products, especially regarding market surveillance and enforcement.
6. Promote activities consistent with the objectives of the WHO Framework Convention on Tobacco Control.
7. To identify and assess the current legislation regarding, but not exclusively tobacco advertising and advertising of emerging products.
8. To identify and develop best practices regarding tobacco endgame strategies and for smoke-free environments.
As more and more countries step up in the game of tobacco control and prevention against tobacco related cancer, a unified Europe is more important than ever. The commitment is also showed in the approaching new EU Cancer Action Plan, where EU MS will stand together in the fight against tobacco. We, the partners of the JATC 2, are commited to championing this fight.
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National Focal Points form an advisory system to participants that operate locally, and with the capacity of allowing equitable
participation in the EU Health Programme across countries.

To provide high quality services to potential applicants and project participants, NFPs should have a common sound knowledge of the rules and procedures of the EU Health Programme. Besides, they should be aware of other available initiatives at both national/regional and EU level that may complement or fit better the needs of national health communities. This last includes leading stakeholders to the right person or organisation, so they can be duly informed.

NFP4Health will contribute to create an innovative, sustainable and coherent network of NFPs that will increase the capacity of the Member States to design and create sustainable implementation actions that will boost the achievement of health objectives for the period
2021-2027. The network will create the best framework to contribute to the growth of innovative, efficient and sustainable health systems.
The main goal of increasing capacities of National Focal Points (NFPs) Joint Action is to create and maintain an innovative ecosystem to facilitate and support that European countries can achieve health objectives priorities established for the period 2021-2027. By developing and strengthening the NFPs capacities of European Countries, the Joint Action aims to provide quality access to the new EU4HEALTH Programme and to assure the complementarity with other regional, national and EU policies, funds and programmes. This action will allow maximizing efforts to leverage all available health funding, to guarantee the accessibility and sustainability of healthcare systems.

To really achieve the change it is necessary to help Member States to build their capacity to design sustainable implementation actions,
irrespective of the source of funding being EU4Health or other EU funding instruments.
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Topic: • Joint Action on Increasing the capacity of national focal points (NFPs) to provide guidance, information and assistance to national applicants on the implementation of the ESF+ health strand
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Tackling low vaccine coverage (VC) is a key area for action. Despite efforts, pockets of unvaccinated individuals persist in Europe. People in prison constitute a sizeable fraction of the population, in absolute number and for its rapid turnover. Incarcerated individuals largely belong to socially-deprived communities with low socio-economic status and education level, high disease burden and prevalence of risk behaviours; and often, sub-optimal access to care. Prisons may be a gateway to offer appropriate and high quality healthcare and vaccination services to individuals while in detention.
To respond to this public health priority, the RISE-Vac consortium brings together multisectorial skills, solid experience and well established networks in the prison health field, reflecting epidemiological and structural diversities of European context.
RISE-Vac aims at improving the health of prison population in Europe by promoting vaccine literacy (VL), enhancing vaccine offer and increasing vaccine uptake (VU). Using state-of-the-art methodologies, RISE-Vac will gather existing evidence on vaccination strategies and services targeting people in prison and combine it with prospectively collected data on (i) attitude and VL among prison population and staff; (ii) vaccination status and VU during incarceration. RISE-Vac will use a co-creation approach to develop information and training materials tailored to people in prison and staff to increase their VL. Models of vaccination delivery will be devised and piloted to respond to the needs of prison population, prison settings characteristics and national priorities. Benefits resulting from RISE-Vac activities will accrue also in the general population, increasing overall VC. By upholding the principle that prison health is public health, the RISE-Vac project will provide tools and data-driven, evidence-based options to guide European countries in improving health status of people in prison and European population at large.
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Increased Access to Vaccination for Newly Arrived Migrants (NAM)- AcToVax4NAM aims to improve vaccination access for NAM making access conditions equitable & guaranteed. The project responds to 2020 WP’s specific topic “Increased access to vaccination for newly arrived migrants in first-line, transit & destination countries”. Objectives: (1) Describe immunization guidance, reception & vaccination offer systems for NAMs (2) Characterize system barriers hindering immunization of NAMs & identify possible solutions
-Reinforce networking capacity among institutional & non-institutional organizations & actors to address health literacy & cultural competency of the health care system with respect to NAM immunization. (3) Strengthen health literacy & responsiveness of organizations, health care professionals and other health operators (such as cultural mediators) to increase capacity building & cultural sensitivity of the health care system for promoting NAM’s active immunization (4) Develop country specific action-oriented flow charts to improve access to immunization comprising identified barriers & proposed solutions/tools/strategies validated by the target group (6) pilot test & evaluate country specific solutions to overcome system barriers emphasizing the life course approach, produce final recommendations & create networks of collaboration. AcToVax4NAM targets health and social care professionals and other related professionals such as mediators working with NAM. The final beneficiaries are NAMs. Expected results/outputs: (1) Updated knowledge on reception & vaccination systems/conceptual framework (2) Country specific information on system barriers & relevant solutions/logic flow charts/Database with tools (3) Capacity building to strengthen health literacy perspectives among target groups/related activities and training (4) Pilot testing solutions to overcome system barriers and demonstrate concrete and effective practices to increase coverage/Recommendations.
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Objectives Recent outbreaks of vaccine preventable diseases have brought to light important gaps in immunization coverage in Europe. Specific population groups have not had sufficient access to vaccines due to socioeconomic, cultural, geographic or health reasons. Activities The Innovative Immunisation Hubs (‘ImmuHubs’) project will 1) Establish proactive partnerships with citizen groups, public health agencies, key stakeholders and the general public to improve access to vaccination in disadvantaged, isolated, and difficult to reach population groups in 8 European countries, according to best practices for community partnerships. 2) Create innovative immunisation actions, which will increase vaccine uptake across borders, generations and population groups. 3) Develop sustainable solutions for vaccine protection of EU citizens, including during and after the COVID pandemic. Type and number of persons benefiting from the project Cyprus, Greece, Finland, Portugal, Poland, and Serbia, will each be hosting 3 ImmuHubs representing 1) disenfranchised populations 2) isolated/closed communities and 3) ethnic/cross-border populations. Two additional ImmuHubs will engage populations with health risks. A set of digital/analogue tools will be deployed to measure the impact of actions taken. Expected results 10% increase in the uptake of childhood and life-course vaccines >75% accuracy in awareness of the immunisation status 80% accurate understanding of vaccination needs specific to the population group 20% increase in planned consultations with health mediators and professionals 20% increase in intergenerational vaccine communication in the household/family unit Type and number of outputs to be produced The 3-year project will generate 24 deliverables dedicated to: management (4), dissemination activities (4), evaluation and COVID-aspects (4), ImmuHubs (4), health literacy in families/risk groups (4), systematic check-ups/analysis/sustainability (4).
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The overarching aim of MentBest is to improve care for patients with depression and to prevent suicidal behaviour in Europe by i) transferring the community-based 4-level intervention concept of the European Alliance Against Depression (EAAD) to new regions and countries in Europe and ii) promoting the uptake of the iFightDepression®-tool, an internet-based self-management tool for patients with depression. Implementation countries (Bulgaria, Estonia, Greece, Italy and Poland) are those countries where EAAD’s 4-level intervention concept has not yet been implemented. In these countries, model regions have been selected in which the 4-level intervention will be implemented and later transferred to other regions. Transfer countries (Hungary, Ireland and Spain) are those countries in which the 4-level intervention concept has already been implemented. These countries will focus on promoting and expanding these interventions to new regions. Both implementation and transfer countries will furthermore promote and coordinate the nationwide implementation of the iFightDepression®-tool and awareness website. MentBest will contribute to reduce the huge diagnostic and therapeutic deficits concerning depression and to prevent suicidal behaviour in Europe, which is particularly timely considering the exacerbation of mental health problems associated with the impacts of Covid-19. Reducing stigma, improving health literacy and help-seeking behaviour are further objectives of MentBest. MentBest will start a long-term process of dissemination of both the 4-level intervention and the iFightDepression®-tool beyond the funding period. Experiences from EAAD member countries have demonstrated that other regions will be encouraged to adopt their own regional 4-level interventions as soon as culturally sensitive materials and support (e.g. by national coordination centre) are available. An explicit goal of Mentbest is to thus ensure long-term sustainability via this self-promoting process.
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The Project AHEAD will address the challenge of medical deserts and medical desertification in Europe in an effort to help reduce health inequalities. The Project’s objective is to provide support to policy makers in selected Member States and other eligible countries to define, design and implement evidence-based and context-specific reforms in the health workforce field that specifically aim to counteract and/or prevent medical deserts. The approach applied in this Project will build knowledge, encourage (digital) innovation in health service delivery to improve access and apply a participatory approach to public health policy making. The Project will be carried out in Romania, Serbia, Moldova, Italy and the Netherlands and will benefit health policy makers, patients’ organizations, health professionals’ organisations, affected communities and more. The countries were carefully selected to highlight different manifestations of medical deserts and to address interconnectedness as a result of health worker mobility. Activities include: desk research; participatory action research; multi-stakeholder consensus building dialogues; high-level policy dialogues at national and EU level. The dissemination of the Projects’ knowledge products and best practices is a cross-cutting activity, aiming to also inspire duty bearers outside the Project. The consortium will produce several deliverables: policy briefs; a set of contextualized and feasible policy solutions to address medical deserts in the countries; an improved definition and taxonomy of medical deserts; a medical deserts diagnostic monitoring tool; a prototype for a medical deserts visual mapping tool; a tested and replicable approach for participatory health policy making. Our ultimate impact at society and EU level is better access to health services, especially in underserved areas, and more equitable access to sufficient, skilled and motivated health workers, starting with the countries involved in the Project.
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Health workforce planning systems show a high variety of maturity in the EU. Member States tend to focus on diverse aspects of managing health workforces and health policy focuses on optimising the operation of health systems by various measures. Initiatives on task shifting can contribute to more effective organisation of care and human resources for health management at different levels, so committing to improve efficient and sustainable health systems in innovative ways.The main objectives of the TaSHI project are to provide a novel understanding and up-to-date knowledge on task shifting and on transferability and uptake of good practices in implementation. TaSHI applies different methods of analyses in order to provide added value on the concept, notion, and implementation of task shifting at EU-, national- and regional levels. TaSHI performs pilots at five implementation sites to gather evidence and data on the different types of task shifting (e.g. working time re-allocation, re-considered scope of practices in primary care, mental health care, radiology and ophthalmology, benefiting from telemedicine and digital health).TaSHI aims to facilitate dialogues and knowledge exchanges between the relevant stakeholders. Strengthening governance and stakeholder engagement for transferring and upscaling task shifting practices plays a crucial role in policy-making supporting health reforms for workforce development, as well as in enhancing cultural sensitivity, flexibility, readiness, and organizational adaptation to task shifting.TaSHI delivers a collection of good practices, useful tools and methods, a guidebook on task shifting supporting the real-life implementation, case studies on the pilots’ experiences, practical training materials and curriculum, and a set of recommendations. The deliverables on tangible solutions and practical products support EU MS at policy and organisational level to initiate and implement their own actions tailored to the local settings.

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The main objective of METEOR is three-fold. First, we will enhance knowledge on the determinants of job retention, as well as on the already successfully implemented interventions and retention policies from literature. Second, we will identify and analyse the main determinants related to retention across the 8 participating hospitals in 4 European countries (Belgium, The Netherlands, Poland, and Italy). Third, we will develop policy recommendations through continuous stakeholder engagement. The knowledge acquired through these steps will be iteratively integrated into an accessible and searchable online toolbox.
Activities: (1) Conduct two systematic reviews, one on the determinants of job retention and one on retention interventions; (2) Conduct a document analysis of micro-level policy documents on retention in the 8 hospitals; (3) Develop a questionnaire to assess job retention in the 8 hospitals; (4) Apply the developed questionnaire to collect and analyse data on the main determinants related to job retention in a representative sample of healthcare workers; (4) Organize workshops with key stakeholders to develop policy recommendations; (5) Develop an online toolbox.
Persons benefiting from the project: We will undoubtedly have an impact on the target stakeholders in the participating hospitals (e.g. 930 physicians and 1300 nurses in the Local Health Facility of Agrigento), but we will potentially also affect stakeholders in the consortium countries and beyond.
Expected results: (1) Increase knowledge on retention determinants, interventions and policies; (2) Develop policy recommendations with key stakeholders; (4) Communicate and disseminate our knowledge through an online toolbox.
Outputs to be produced: (1) Two systematic reviews; (2) Analysis of micro-level retention policies; (2) Analysis of retention determinants in the hospitals; (3) List of policy recommendations; (4) Online toolbox.

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Vaccination is an increasing priority at global, European, and national levels. Given stagnating vaccination coverage across Europe, fueled in part by growing vaccine hesitancy and the specific challenges posed by the COVID-19 pandemic, targeted action through a 'whole of society' approach should be taken to increase vaccine uptake and contribute to the 2018 Council Recommendation on vaccination. Building on existing initiatives and learnings, the IMMUNION project (Improving IMMunisation cooperation in the European UNION) will add value to EU and national initiatives - particularly the Coalition for Vaccination. IMMUNION's consortium partners represent five Coalition for Vaccination members, four national public health actors, one university and two media and communications firms. This balanced partnership will cooperate to increase stakeholder collaboration to address issues of access to accurate information about vaccination and to improve education and training opportunities for health professionals and students. Project activities are tied directly to the project's general and specific objectives, with the ultimate aim to support the Coalition for Vaccination. Activities are spread across six complementary and inter-linking work packages that are joined together by a focus on effective communication - both within the health sector and to wider groups in society. Activities include the development of a dedicated Coalition for Vaccination website with integration to the existing SEKI Platform, a Training-of-Trainers Workshop, developing National Toolboxes of vaccination communication best practices, and improving the visibility of the Coalition for Vaccination. Expected outcomes include increased awareness and use of validated training materials, increased ability for health professionals and students to communicate about vaccines, enhanced media reporting on vaccination, and improved overall equity in vaccination for populations with lower vaccine coverage.
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ROUTE-HWF aims to reduce inequalities in access to healthcare among countries and regions in Europe by supporting EU Member States in designing and implementing their policies related to regional medical deserts. It will do so by: (1) providing a definition and taxonomy of the concept of medical deserts, (2) developing guidelines on how EU Member States can monitor and measure medical deserts (as defined and categorized in the developed taxonomy) at national and subnational levels, (3) providing in-depth insights on factors driving “desertification” and of HWF policy responses and approaches to medical deserts, (4) providing an optimal mix of HWF policy responses and approaches to medical deserts per category of the taxonomy on medical deserts, and (5) developing a roadmap which will support EU Member States in designing and implementing their health workforce policies, actions and initiatives related to medical deserts.

Divided over 3 horizontal WPs and 5 core WPs, the following methods will be used to achieve these aims: a literature study, a country survey among 33 European countries, a database search, five national workshops (NL, FI, ES, PL, HR) with 10 participants each, six in-depth case studies, and a 1,5 day consensus building workshop with 66 participants from 33 countries.

The elements of the ROUTE-HWF roadmap will be strongly rooted in practice and support public authorities and health professionals at national and subnational levels in (a) better understanding the characteristics of medical deserts in their country or region, (b) better monitoring and measuring medical deserts, including the effects of policy measures, and (c) improving the design and implementation of policies to move out of medical deserts in their country or region, by providing a rationale for a mix of policy measures, taking into account relevant contextual factors (including possible legal and other barriers).

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The expression of medical desert is commonly used in the public and mediatic field referring to several situations or areas where people have difficulties to access care (e.g. waiting time, doctor’s registration difficulties or long distances to hospital).The identification of such areas became a major issue and is exacerbated by the fact that the accessibility itself is complex to address due to its multidimensional nature (spatial, physical, temporal, financial, and cultural).The OASES proposal aims to represent a source of knowledge in European medical deserts, reinforcing the capacity of health authorities of EU Member States to reform their health systems and address all the important aspects to successfully tackle the challenges that the medical desert is posing, with specific regard to actions focusing on skill mix, task shifting, use of e-health and IT systems, recruitment and retention management and policies, in order to guarantee universal coverage also in rural and underserved areas. To achieve this, the proposal presents and supports the application of a stepwise methodology focused on a) definition of a measurement methodology and tool applicable in different contexts (minimal, intermediate, advanced dataset); b) implementation of the measurement methods and tools in selected pilot sites of 7 European countries; c) assessment, policy actions analysis and sustainability in each pilot site, d) impact evaluation in each pilot site and updating the measurement methods and tools according to the pilot results; e) scaling up of the methods and of the policy actions at EU level.
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The Joint Action Towards the European Health Data Space (TEHDAS) is a consortium of 26 EU MS and other countries that work to improve cross-border use of health data for the benefit of citizens’ health, for public health, research and innovation.TEHDAS builds on earlier EU actions fostering the digital transformation of European health systems. It contributes to responding to the Member States’ call at the October 2020 European Council to set up a European Health Data Space and proposed by the von der Leyen Commission.The Joint Action helps Members States and the Commission in developing and promoting concepts for sharing of data so that in the future Europe, citizens, communities and companies benefit from a protected and seamless access to health data regardless where it is stored.TEHDAS will suggest options for an operational framework and governance in order to overcome legal and technical differences between countries. TEHDAS is grounded on the principles of transparency, trust and citizen empowerment. It will work on technical and semantic challenges, propose services, architectural and infrastructural elements required in the European Health Data Space.Citizens increasingly manage their data which requires a better understanding and a European perspective. To maintain trust in fair and secure data sharing, TEHDAS will suggest strengthened governance mechanisms for cross-sector use of health data in common data spaces at the EU and Member State levels.TEHDAS will reach out and engage with many types of stakeholders to reflect their needs and expectations, explore views on economic issues, and suggest concrete ways to integrate results into the future the European Health Data Space.
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Topic: • Addressing differences in national General Data Protection Regulation (GDPR) implementation in the health sector, including the European Health Data Space and the health data use
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The present proposal aims at outlining the key points for the Conference taking place in April 2021 in Lisbon under the Portuguese presidency. This Conference is one of the flagship events in the health sector during the presidency. The Conference will promote key topics under the Portuguese presidency agenda, specifically, the 3 main pillars: Availability, Accessibility and Affordability. The aim is to define priorities and policy options that will consequently be translated into concrete actions regarding access to medicines and medical devices across the EU. Furthermore, the Conference aims at promoting the European Health Union and strengthen cooperation between different NCA?s and stakeholders in the EU scenario
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The application for the Specific Grant Agreement 2021 continues the work of EURORDIS - Rare Diseases Europe as described within the Framework Partnership 2018-21.
EURORDIS key operational objectives for 2021 build on the work of the previous work around the 4 overarching objectives:
1 Consolidating the rare disease community
2 Actively engaging RD patient representatives into the effective implementation and monitoring of legislation and strategies
3. Building capacities and empowering members and volunteers
4. Sustaining human, financial and organisational resources
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Schools for Health in Europe Network Foundation (SHE) has as an overall mission to make every school a health promoting school. Through its activities in the currently 40 SHE member countries in the European region, SHE encourages each country to further develop and implement national policies that contribute to the good health and well-being of all children and young people.
The operational objectives are:
1. Organizing a two-day SHE assembly meeting for the SHE members.
2. Maintaining the SHE helpdesk.
3. Sharing information about school health promotion.
4. Encouraging regions and countries in EU Member States to join SHE and encouraging SHE members to initiate innovative regional and cross-border cooperation.
5. Collaborating with external organisations and networks.
6. Organising a capacity building workshop for SHE members.
7. Developing and implementing teacher’s materials
8. Developing and implementing of Health Promoting School standards + indicators, version 2.0.
9. Promoting school twinning.
10. Implementing the SHE School Manual, version 2.0.
11. Organising a SHE academy on theory, research and practice of school health promotion.
12. Further improving the visibility, accessibility and quality of the new SHE website.
13. Developing communication materials to increase SHE visibility and access to evidence-based information on school health promotion.
14. Representing SHE at European/ international conferences for advocacy on school health promotion.
15. Coordinating the activities of the SHE Research Group.
16. Mapping the development and implementation of school health promotion in the EU Member States.

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Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. However, thalassaemia’s prioritisation on national health agendas and the development of national plans for its effective control in the EU has been hampered by the many challenges involved, mainly related to its rarity and migration.

THALassaemia In Action 2021 (THALIA2021) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities:

1. Continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. This is to be achieved via the development of e-learning tools and the launching of capacity building courses and training seminars.

2. Raise awareness on thalassaemia and the importance of optimal care amongst the public at large, as well as among THALIA target groups at national and European level. This will be attained using an array of online tools, activities and publications.

3. Prioritise haemoglobin disorders and their control (prevention and management) at European level. This will be accomplished by establishing and training national patients’ associations in EU priority countries, creating an EU Electronic Health Record and entering into policy dialogue with policymakers at national and European level.

4. Support research programmes and studies focused on the clinical management of Thalassaemia. This is to be achieved via the publication of guidelines on the clinical management of Thalassaemia, participating in scientific conferences and providing fellowships to medical specialists.

Knowledge is our power. Unity is our strength.
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This is the final year of a proposed 4-year Framework Partnership Agreement (FPA). It builds on the actions under a previous Framework Partnership Agreement, OBTAINS-E, supported by the 3rd Health Programme. OBTAINS-E is the acronym for OBesity Training And Information Services in Europe.

The OBTAINS-E2 programme contributes to the EU 3rd Health Programme and its priorities for preventing disease and supporting healthy lifestyles, reducing health inequalities, promoting cross-border medical expertise (including rare causes of obesity), and supporting evidence-based and cost-effective prevention and health promotion activities. OBTAINS-E2 will support access to best-practice weight management services for all citizens, along with high quality information available to all, with a special focus on inequalities and the development of policies to tackle obesity across the region.

In 2021, OBTAINS-E2 will focus on:
a) training of health care professionals through expansion of an online e-learning platform of obesity training
b) Improving data availability for Europe and information on European interventions to address obesity and
c) supporting policy development through an evidence repository, briefing papers and webinar series.
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The Association of European Cancer Leagues (ECL) provides a unique platform as the only organisation with the mission of uniting at the European level, national and regional cancer leagues to achieve a cancer-free Europe. In coherence with the FPA 2018-2021, and building upon the outcomes from previous years of the FPA, this proposal focuses on the core activities to be implemented in 2021 in respect of the following strategic objectives:

1) Ensuring cancer control remains high on the political agenda;
2) Promoting the European Code Against Cancer (ECAC) as the essential tool for cancer prevention;
3) Supporting the implementation of the Council Recommendation on Cancer Screening (2003); and
4) Uniting leagues to advocate for equal access to treatment, support, and rehabilitation for cancer patients;
5) Advocating for the European Guide for quality improvement in cancer control to be mainstreamed in national cancer plans.
These objectives will be achieved by several actions, including:

- Implementing the MEPs against Cancer (MAC) 2019 elections manifesto and supporting with a toolkit to commemorate World Cancer Day;
- Publishing a communication guideline for cancer leagues to promote the European Week against cancer (EWAC);
- Developing the viewpoint of cancer leagues on the future of the European Code against Cancer (ECAC) based on the findings of the ECAC evaluation;
- Create a special tutorial on the background and application of the ECAC for young advocates in the ECL Youth Ambassadors programme;
- Supporting the roadmap towards a 3rd implementation report on cancer screening in the EU;
- Releasing the updated edition of the Patient Support Working Group Rehabilitation Atlas;
- Continuation of the advocacy work of the ECL Access to Medicines Task Force implementing the 2018 'Let's Talk Access'
White Paper on Equal Access to Medicines.
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WMDA is an association that strives to faciliate the best possible stem cell source for transplant patients. This is achieved by member organisations that collaborate so that more patients are able to find the best possible stem cell source. In addition, WMDA strives to have high quality products available. On the other side, WMDA promotes donor care by protecting the righs and safety of the donor.
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In the fourth and last year of the multi-annual work programme under our FPA 2018-2021, the Smoke Free Partnership coalition work plan for 2021 will continue the work towards the achievement of the overarching goal of preventing cancer and chronic diseases through smoking prevention at EU and national level with a special focus on young people and health in all policies:
- The campaign for increasing minimum excise duties on tobacco products as part of the revision of the EU Tobacco Tax Directive.
- The campaign to promote tobacco control research.
- The campaign to recognise the role of tobacco control funding within international development assistance programmes at EU and member state level as part of chronic disease prevention and sustainable health systems.
- The campaign to reduce and eliminate the tobacco industry interference in the fight against the illicit trade of tobacco products at EU and global level.
- The campaign to strengthen tobacco advertising, promotion and sponsorship (TAPS) restrictions and enforcement at national and European level.
- The campaign to communicate the role, value and impact of FCTC implementation to policy makers in EU and national institutions, particularly in the context of the lessons drawn from the coronavirus crisis for European health systems.
- The ongoing activities to monitor, expose and rebut tobacco industry interference across all policy work.
- Co-ordinating European civil society advocacy ahead of, during, and after the 9th Session of the Conference of the Parties to the FCTC (COP9) and the 2nd Meeting of the Parties to the Illicit Trade Protocol (MOP2) .
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TB Europe Coalition (TBEC) is the only regional civil society network working exclusively on TB in the WHO Europe region and, with 220 members in 35 WHO Europe countries, is uniquely positioned to increase the political will amongst decision-makers and strengthen necessary capabilities amongst its members to end the TB epidemic across the region. Despite being preventable and curable, TB is the biggest infectious disease killer in the world, with the WHO Europe region being home of 18 high-priorities countries, including the numerous EU Member States. Although global leaders have committed to ending the epidemic by 2030, including reiterating their commitment at the UN High-Level Meeting on TB, the current slow rate of progress means that this will not be achieved for another 100 years at least. It is essential that civil society pushes national governments to ensure that the political commitments expressed at international and regional fora result in necessary and visible changes at the country level. TBEC has identified health system financing, quality people-centred care and TB R&D and access to existing tools as the key thematic priorities in the region. TBEC has identified four key objectives for 2020 work plan: 1) well functioning and accountable TBEC governance mechanisms; 2) comprehensive communication and outreach activities, aimed at greater membership participation and collaboration; 3) strong partnerships with key decision-makers and relevant civil society networks, working in TBEC priority areas; 4) capacity building activities via exchange visits, country workshops, mentoring programme and webinars. TBEC's objectives are directly relevant to the four 3rd Health Programme Objectives, DG SANTE and CHAFEA. The foreseen activities will further increase the EU's existing public health knowledge on TB, advance coordinated efforts to fight DR-TB and TB-HIV co-infection, reducing the financial burden.
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Health Action International’s work in Europe focuses on improving access to medicines through evidence-based advocacy, sharing expertise and engaging for change. To do this we campaign for greater transparency, and rationally used, affordable, safe and effective medicines.

PRIORITIES FOR 2021
European Parliament Working Group on Innovation, Access to Medicines and Poverty-related Diseases: HAI and MSF provide the secretariat for a group of European Parliamentarians interested in access to medicines issues. Over 2021 we will mobile this group to advocate on numerous issues.

Furthermore, we aim to change the narrative around TRIPS flexibilities to encourage more regular use of these legitimate tools. In 2021, we will implement the conclusions of the Great Health Hack, including producing the beta version of the technical solution suggested by participants. We hope to broaden understanding of the evidence base behind IP flexibilities and facilitate more policymakers to support implementation of a sustainable pricing system.

We will continue to share our recommendations how Member States can achieve greater transparency in medicines prices, research and development (R&D) costs and reimbursement decisions.

We will facilitate medical students and healthcare professionals to detect, counter and avoid exposure to pharmaceutical promotion.

As always, there will be many other upcoming issues and opportunities in access to medicines this year, both regionally and globally. We will be watching how other dossiers and events unfold in the fight against medicine shortages, also in light of COVID-19.

We pride ourselves on being active members of European civil society and part of the global access to medicines movement, via groups like the European Alliance for Responsible R&D and Affordable Medicines, Medicijnen Netwerk Nederland, HTA Network Stakeholder Pool and the EMA PCWP.

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EPHA's 2021 SGA proposal includes the continuation of activities in eight thematic priorities, designed to conclude the multiannual 2018-2021 FPA and reach its objectives. This will provide ongoing support to all areas of the Third Health Programme despite its formal expiry at the end of 2020.

Crucially, EPHA proposes to broaden its activities in light of the new European Commission priorities announced in 2019, and the significant socio-economic challenges, policy and funding opportunities for public health resulting from the 2020 COVID-19 outbreak. Moreover, 2021 will be a year of transition for EPHA as a new Strategic Plan will be implemented that will contain flexible policy clusters. Therefore, the 2021 SGA proposal incorporates activities in relation to the pandemic recovery process, the EU Green Deal, increased digitalisation and other pressing issues.

A big focus will be placed on developing EPHA's "financing for health" thematic priority, which suffered from lower resources in previous years. Given the the unprecedented EU funding available to tackle health threats and ensure health systems strengthening, EPHA aims to play a key role in ensuring that available funding streams will be spent wisely, inter alia to boost prevention, avoid new health/social inequalities and avoid austerity policies in health.

EPHA’s annual work programme will provide added EU value by supporting policymakers and civil society through the development of policy recommendations, best practice exchanges and peer learning, linking up EU and national public health stakeholders and building capacity.

The work will be undertaken by EPHA’s Secretariat team, supported by interns, trainees and external consultants contributing to specific deliverables and milestones.

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Against the epidemiogical background and evidence that was described in the FPA2018 – 2021, in 2020, AIDS Action Europe (AAE) will continue the work under the three objectives
1. AAE contributes effectively to the HIV, TB and hepatitis response in Europe
2. AAE provides platforms to communicate and facilitate collaboration, networking, and linking and learning
3. Continuous improvement of network collaboration through governance and internal management.

Herewith we will continue focusing on the following six core thematic areas identified by our members and partners:
- Community based voluntary counselling and testing
- Affordability of medicines
- Tackling legal barriers in the response to HIV, TB and hepatitis
- Criminalisation of HIV non-disclosure, exposure and transmission
- Sexual and reproductive health and rights
- Tackling stigma and discrimination

The application for the SGA 2021 is written in times when due to the SARS CoV-2 - Coronavirus the planning of activities for the next year is extremely difficult. AAE will implement the activities planned in the FPA for 2021 as much as possible, taking into consideration risk-mitigation scenarios in case that restrictions entail the adaptation of activities, for instance by conducting meetings online rather than face-to-face or other format changes. There are indications that, even if the Corona-Virus situation is improving, it will have a profound impact on collaboration, communication and content of international work in the field of HIV, viral hepatitis and TB. This application reflects also cross-sectional acivities when the expertise from the HIV, TB and viral hepatitis field for instance in tackling discrimination and stigma, criminalisation or affordability can be transferred to the Coronavirus situation.
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Alzheimer Europe outlined five strategic priorities in its framework partnership (2018- 2021). For the 2021 Work Plan, the following specific objectives can be outlined for each of the five priorities:
1. Providing a voice to people with dementia
In 2021, AE will build on its successful involvement activities in the previous years thanks to its dynamic and impactful European Working Group of People with Dementia bringing together 12 people with dementia from 12 different organisations and:
• Continue to ensure that the voices of people with dementia are duly included in all operating grant activities by involving its European Working Group of People with Dementia
• Organise four meetings of the group and provide a forum for people with dementia at the organisation’s Annual Conference in Bucharest
• Carry out an analysis of public and patient involvement experiences of people with dementia in EU funded projects.
2. Making dementia a European priority, supporting the development of dementia strategies and promoting dementia-friendly initiatives
In 2021, AE will build on its close collaboration with national health ministry officials and, after focusing on national dementia strategies (2018), the prevalence of dementia in Europe (2019) and training and continuing education programmes for healthcare professionals (2020), AE will:
• Coordinate and provide the secretariat for the European Group of Governmental Experts on Dementia and organise two meetings of the group to share national experiences and good practices on topics identified by national health ministry officials
• Continue to monitor the impact of the COVID-19 pandemic on the situation of people with dementia and their carers and develop recommendations to promote and protect their needs in pandemic strategies and policies
• Collect information on existing dementia-friendly initiatives and identify how recommendations from the 2nd Joint Action on Dementia and the European Working Group of People with Dementia have been implemented
• Develop a comparative report on national dementia-friendly initiatives and publish the findings in the 2021 Dementia in Europe Yearbook.
3. Promoting a rights-based approach to gender, sex and sexuality in dementia
In 2021, after focusing on the situation of people with dementia and carers from minority ethnic groups (2018), the participation of people with dementia in research (2019) and the ethical implications of legal capacity and decision making (2020), AE will:
• Explore ethical issues related to sex, gender and sexuality and their impact on the experience of living with dementia and caring for someone with dementia and carry out a review of scientific publications and grey literature on these subjects
• Bring together a working group with experts on ethics, human rights, sex, gender and sexuality to discuss the findings of the review and develop recommendations
• Publish the recommendations with the findings of the literature review in a report.
4. Supporting dementia research and organising an Annual Conference
In 2021, AE will continue with the development of its European Dementia Observatory which provides an important platform for researchers to present the aims and outcomes of research projects via AE’s website, newsletter, social media and conferences. After focusing on developing an inventory of clinical trials (2018), treatment guidelines (2019) and EU-funded research projects (2020), as well as organising successful Annual Conferences in Barcelona (2018) with 814 participants and The Hague (2019) with 981 participants and a virtual conference in 2020 due to the COVID-19 pandemic, AE will:
• Closely follow and report on scientific and policy developments in the field of dementia in its monthly e-mail newsletter, its website and via social media
• Organise the postponed conference from 2020 in Bucharest, Romania under the motto “Building bridges” from 29 November to 1 December with at least 500 p
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Efforts to mitigate the devastation of tobacco-attributable morbidity and mortality have advanced in Europe and consist of the adoption of the EU Tobacco Products Directive (TPD), and the WHO FCTC. In addition, European Commission’s Green Deal, a milestone for cancer prevention, recognises the importance to address reinforced measures to limit tobacco use while Europe’s Beating Cancer Plan aims to reduce the cancer burden for patients, their families and health systems. In the face of a changing tobacco product landscape, where dual- and poly-tobacco use has become an increasing public health problem, strategies for addressing the tobacco epidemic must also evolve. COVID-19 pandemic also confirmed how vulnerable smokers, e-cigarette users, novel product users or those exposed to second-hand smoking can be, as preliminary data showed that they are at increased risk for severe symptomatology, hospitalisation, admission to an ICU or even death.

In past years ENSP illuminated new challenges the tobacco control community faces with the emergence of new products that undermine tobacco control and cessation efforts and created evidence fact sheets on taxation, tobacco flavours and heated tobacco and facilitated high-level discussions. ENSP also devoted its work to provide evidence on the 2020 Menthol Ban and emerging EU market trends (the entry of Juul) to ensure that stakeholders, from EU policy makers to the public are provided with “evidence-based” information. Moreover, a pervasive challenge expressed by ENSP Network Members in 2019/2020 is the continued interference and new tactics employed by the tobacco industry that has become more clandestine, even in the period of COVID-19 pandemic.

An evolution of the 4-year strategy detailed in the FPA, the 2021 ENSP annual work programme is structured into 4 general objectives that stem from a problem analysis area, to be addressed through 8 operational objectives continuing to further develop sustainable activities.
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The overall objective of Correlation – European Harm Reduction Network (C-EHRN) is to improve the access to and the
quality of harm reduction services for PWUDs including other related vulnerable and marginalised people and to enhance
policies and practices that increase social inclusion. The strategic objectives, activities and operational targets of C-EHRN
are organised in four different pillars: Network, Monitoring and data collection, Capacity building and Advocacy. The network
pillar strives to improve and strengthen the overall structure of C-EHRN and creates the prerequisites for the implementation
of actions in the other three content-based pillars. These focus on drug use and harm reduction (HR) in general and more
specifically on HCV in substance users, new drug trends and drug using patterns and overdose prevention. Activities within
the various pillars inform and contribute to each other. C-EHRN activities in 2021 build upon the developments and
achievements of the previous years and respond to current challenges. In short, this includes: Network: Further expansion
and strengthening of the network, by utilizing the expertise of its members and by involving them actively in the development
and the implementation of C-EHRN activities. Monitoring: Enhance the content and the implementation of the C-EHRN
monitoring tool, by building onthe learninh of 2019 and 2020 and by improving coverage, outcomes and
applicability of the tool. C-EHRN Focal Points and the Scientific Expert Group (SEG) will play a
major role in this process. Capacity Building: Ongoing collection of resources and tools for the online knowledge and
training hub and development of thematic papers, materials and development and organisation of two thematic expert meetings. Advocacy: Identify and analyse relevant policy developments and formulate an updated advocacy strategy for 2021. C-EHRN
activities and policy recommendations.

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Europe have experienced several terror attacks in recent years. Health preparedness and cross sectoral response also involves planning for terror attacks including biological or chemical agents. To be better prepared to handle these types of terror attacks EU have set up a call, as part of the Third Health Programme 2014-2020, to develop a proposal for Joint Action to Strengthen Health Preparedness and Response to Biological and Chemical Terror Attacks. This acronym for the Joint Action is JA BICTRA.

The JA BICTRA is under development, and the main objectives are to (1) to address gaps in health preparedness and (2) the urgent need to strengthen cross-sectoral work with the security, civil protection and health sectors.
The coordinator, has in the development of the proposal, focused on attracting relevant technical expertise from health, law enforcement and civil defense sectors to support delivery on the main objectives.
The work of the Joint Action will be done in eight work packages. Four of which are core work packages: coordination, dissemination, evaluation and integration & sustainability. And four technical work packages that will be addressing the following areas: preparedness and response planning, cross sectorial collaboration, risk and crisis communication and novel threats.
The proposal is supported by 18 applicants, and at the time of submission it includes 34 affiliated entities. If successful, the project will have a running time of 36 months.

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The HAPPY PATIENT project aims at reducing the inappropriate use and dispensing of antibiotics in the most common community-acquired infections (i.e., respiratory tract infections, urinary tract infections, dental infections) with a multifaceted intervention in health care facilities as suggested in point 4.2 of the EU guidelines for the prudent use of antimicrobials in human health. The multifaceted intervention will be carried out in five countries with a diverse pattern of antibiotic consumption: ES, FR, LT, PL and GR.
We will follow a model which both promotes both stakeholder stewardship and is patient-centred. The critical focus will be on the most important interaction in determining usage of antibiotics: contact between patients and health professionals at different levels of the Health Care System. Hence, activities of HAPPY PATIENT will target patients, primary care professionals (general practitioners, nurses, and dentists), secondary care (out-of-hours services), nursing homes and community pharmacists.
We will follow the Audit Project Odense (APO) methodology developed in FP6 HAPPY AUDIT project. APO consists of an audit-based registration to perform a context analysis before the implementation of the multifaceted intervention, and then to perform an assessment of changes after the implementation of the multifaceted intervention. Based on the Normalization Process Theory for changing behaviour, the multifaceted intervention will include: a) peer feedback with reflexion and discussion, b) enhancement of communication skills in order to improve the communication process between the health professionals and the patients, c) patient information leaflets and posters, d) country-tailored information on antibiotic usage(incl. the “antibiotic foot-print”).
HAPPY PATIENT expects to reduce the inappropriate prescription of antibiotics by 40%. Its key outputs will be both scalable and capable of implementation throughout the diverse health systems in the EU.

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In the second half of 2020, Germany will hold the Presidency of the Council of the EU, thereby initiating the trio presidency Germany-Portugal-Slovenia. The German Federal Ministry of Health would like to use this opportunity to contribute to further improving healthcare for all EU citizens.
EU member states are facing common national and international challenges. One of the prevailing trends of recent years is the digitalisation of health services and administration. Germany sees enormous potential in the use of telemedicine, big data, Artificial Intelligence and health applications. The intended High-level conference will hence focus on the future of digitalising Europe's health sector by addressing some of these common challenges and discussing potential solutions. It will take place on 11. November 2020 at Radialsystem V in Berlin. At the centre of the conference will be the question of how Artificial Intelligence impacts health care or how it can be better utilised to improve the latter in the interest of patients EU-wide. It will be structured around the patient pathway from diagnosis to hospital and home care.
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The journey of care delivery transformation in Europe is just at the beginning, and the underlying digital health technologies that will support the transformation of health and care need to be purposefully designed, developed, and must demonstrate cost-effectiveness potential.
The EU has launched a series of initiatives to support facing these challenges, as the EIP-AHA with actual twinning amongst partners, various Joint Actions and EU funded projects. Based on this previous work, four early adopters´ original Good Practice (oGP) were selected to be transferred to other EU countries (next adopters). concerning integration, chronic conditions, multimorbidities, frail people and patients with complex needs, self-care, prevention and population health, disease management and case management.
JADECARE intends to reinforce the capacity of health authorities to successfully address important aspects of health system transformation, in particular the transition to digitally-enabled, integrated, person-centred care and support the best practice transfer from the systems of the “early adopters” to the ones of the “next adopters”.
JADECARE is focusing on the transfer and adoption of four Good Practices, so-called oGPs: Basque Health strategy in ageing and chronicity: integrated care, Catalan open innovation hub on ICT-supported integrated care services for chronic patients, The OptiMedis Model-Population-based integrated care (Germany) and Digital roadmap towards an integrated health care sector (Denmark).
JADECARE will involve partners from 17 countries all around Europe. providing a complete scenario of the idiosyncrasy and differences that can be found. The local context, maturity of integrated care models, legal frameworks, culture/values and relevant leaders are going to be considered for each of the 23 “next adopters”. The methodology will allow the transference in different contexts: socioeconomic, cultural, legal, models and maturity of health syst
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The main focus of the Best-ReMaP Joint Action will be on adapting, replicating and implementing effective health interventions, based on practices that have been proven to work in the areas of food reformulation, framing of food marketing and public procurement of healthy food in public settings, thus contributing to increased offer of healthier options of processed foods (by reducing salt, sugar and fat from the processed foods) available in EU (super)markets. The JA will implement a European Standardised Monitoring system for the reformulation of processed foods. The JA aims to deliver a harmonised EU approach to reducing unhealthy (digital) food marketing to children and adolescents and to use already developed tools for harmonised monitoring of (digital) marketing. A prototype catalogue of food will be tested in the public procurement procedure to contribute to the higher quality of menus by assuring transparent quality of the procured foods within public institutions. Building on this work, the JA will support implementation, transfer and integration of the results, outcomes and recommendations of the Best-ReMaP JA into national and EU-level policies. Throughout the JA processes, the participatory engagement of EU and national stakeholders in the field will be prioritised.
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Paediatric transplantation has dramatically changed the life expectancy of many children by providing treatment for organ failure who would otherwise have not survived. European Reference Networks (ERN) for rare diseases should serve as research and knowledge centres, updating and contributing to the latest scientific findings, treating patients from Member States and ensuring the availability of subsequent treatment facilities where necessary. ERN TransplantChild is focussed on both paediatric Solid Organ Transplantation (SOT) and Hematopoietic Stem Cell Transplantation (HSCT). Both SOT and HSCT are low-prevalence and complex conditions that require highly specialised expertise and resources. Current approaches are insufficient to fully address long-term graft and patient survival while providing the best possible QoL. The overall objective of the project is to create PETER, a new rational, efficient, interoperable, open, accessible paediatric transplant registry for all type of paediatric transplantation that allows generating real-world evidence monitoring by the identification of common outcomes for all types of transplant, and which can be used as a model to support care and research for the benefit of patients, improvement of the transplanted patient healthcare, their life expectancy and long-term quality of life of children and their families. Peter will lean on an interoperable technology platform with a module of business intelligence that will allow it to be a predictive registry directly impacting on the (a) process of patient care, improving the process of personalised clinical decision-making in the healthcare systems. PETER shall be built with the support and according to the standards set up by the European Platform on Rare Diseases Registration (EU RD Platform).
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ENROL, the European Rare Blood Disorders Platform, has been conceived in the core of ERN-EuroBloodNet as an umbrella for both new and already existing registries on rare hematological disorders (RHDs). ENROL aims at avoiding fragmentation of data by promoting the standards for patient registries’ interoperability released by the EU RD platform. ENROL’s principle is to maximize public benefit from data on RHDs opened-up through the platform with the only restriction needed to guarantee patient rights and confidentiality, in agreement with EU regulations for cross-border sharing of personal data.
Accordingly, ENROL will map at the EU level demographics, survival rates, diagnosis methods, genetic information, main clinical manifestations and treatments in order to obtain epidemiological figures and identify trial cohorts for basic and clinical research. To this aim, ENROL will connect and facilitate upgrading of existing RHD registries, while promoting the building of new ones when / where lacking. Target-driven actions will be carried-out in collaboration with EURORDIS for educating patients and families about the benefits of enrolment in such registries, including different cultural and linguistic strategies.
The standardised collection and monitoring of disease specific health care outcomes through the ENROL user-friendly platform will determine how specialised care is delivered, where are the gaps in diagnosis, care or treatment and where best to allocate financial, technical or human resources. Moreover, it will allow promoting research especially for those issues that remain unanswered or sub optimally addressed by the scientific community; furthermore, it will allow promoting clinical trials for new drugs. ENROL will enable the generation of evidence for better healthcare for RHD patients in EU as ultimate goal.
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The ERN eUROGEN, currently consisting of 43 HCPs from 17 EU Members States, aims to set up a large patient registry collecting individual data from patients suffering from rare urogenital diseases or complex conditions. Currently, very limited data is being gathered about disease progression, surgical procedures and treatment outcome, and the few existing databases are not standardized, fragmenting and scattering the information. Moreover, there is a lack of long-term follow up of the treatment outcome into adolescence and adulthood, which hinders improvement of treatments over time.

Here, ERN eUROGEN will launch the core registry containing the 16 JRC core elements plus several urogenital specific data elements. Together, they will conform the pilot phase of the registry where physicians from all 43 HCPs will register their last 30 rare cases in an anonymous way. The pilot phase will allow to get used to the registry and to perform a clinical snapshot of the current practices i.e. to compare the clinical management of these cases among the expert centres across Europe.

Besides, we will start to integrate four existing rare urogenital disease-specific registries into eUROGEN registry by assessing interoperability and data elements to be imported. We will also prepare the next expansion phase of the registry by collecting the informed consent forms of patients, incorporating suggestions of the users from the pilot phase and enlarging the data set of the eUROGEN registry. Thus, the main outputs will be the operational registry, its governance and the expansion plan, the synchronization protocol, the practice variation study and patient cohorts for future research and clinical trials.

The eUROGEN registry for all 114 rare urogenital diseases will benefit patients and their families who go through a diagnosis odyssey, and the physicians who will learn about seldom conditions and get new insights into the best treatment options, impossible on a national scale.
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Rare diseases need more means in order to help share information on research, diagnostics and also provide equity in treatment. Therefore the European Commission has developed a global European registry tool with functions to make data findable, accessible, interoperable and reusable. In parallel ERN-Skin is going to work with UMCG in order to build a central ERN-Skin registry that will receive patient information from different European sources and will push that information into ERDRI, the European global registry. First the new registry will be developed and interfaced with ERDRI, then connections will be established between existing registries in the different HCPs of ERN-Skin and the central ERN-Skin registry. The objective is to cover all diseases. Today there are roughly 20 000 patient records scattered in European HCPs for rare Skin diseases. This new process will enable additional HCPs that have no registry today, to fill-in forms. Therefore we can anticipate the total amount of records to increase a lot. The registry will be developed by UMCG on the Molgenis platform. Work has to be done on the homogenization of data, the required datasets in order to cover all diseases, the patients' consents. Dissemination will be crucial to make the tool sustainable: patients' organizations will be informed of the project and involved in its advancement, HCPs will be regularly informed and trained on the tool, statistics will be published regularly. Also, user guides will be available and webex demonstrations will be performed. A Super User will be in situ at Hospital Necker who will be the main point of contact for questions regarding the use of the central registry. This person will also follow-up on any new developments of the central ERN-Skin registry tool.
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Within our EPICARE network, we want to build a useful registry for all patients with rare and complex epilepsies. This registry will contain the common data elements, as proposed by EU RD platform, as well as key epilepsy data fields such as etiology and treatment modalities. The existing pilot version of our registry will be updated and put an a REDcap platform. Pseudonymisation will be done with the EUPID tool and data fields will be FAIRified, so that interoperability with other registries and database will be possible. Links with Orphanet, WHO and genetic databases will be installed. After a pilot trial, the registry will be rolled out in all EPICARE centers. In a next phase, collaborations with other partners such as RD NEXUS and patient organisations (EPAG) will be established so that the EPICARE registry will become a pivotal element in all EPICARE activities. The EPICARE registry, as well as the links with other ERN and non-ERN registries and databases, will allow us to identify where in Europe the patients are located with rare and complex epilepsies and will make dedicated research, optimisation of diagnosis and treatment possible.
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This project proposal concerns the registry needs of VASCERN, the ERN on rare multystemic vascular diseases, which was launched in March 2017 and which is a 5 years project co-funded by the 3rd Health Programme under a Framework Partnership Agreement.

In our VASCERN registries' project, we will:
• Use the JRC / ERDRI for storing metadata / EU Common dataset and start transforming the registries into FAIR registries
• Adapt the plan to the structure of VASCERN which is unique because of many diseases with no relations between them (no common point between PPL and HTAD except that these diseases are vascular diseases): therefore there is a need for different registries:

1) common data registry: minimum EU dataset. Already available will be the core of each registry of each of our 5 Rare Disease Working Groups (RDWG).
2) Diseases specific registries: one per RDWG (meaning 5). These rare diseases specific registries can be based on the more complete and evaluated registry (HTAD, MSA and HHT) or can be the creation of a new registry (VASCA and PPL)
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EURO-NMD, ERN for Rare Neuromuscular Diseases, spans 14 European countries, with 61 reference centres that oversee more than 100,000 patients. Core objectives are the implementation of clinical practice guidelines and the definition and monitoring of core indicators of guideline conforming management, treatment quality and patient health outcomes. Patient registries are key instruments for the ERN to be able to deliver its objectives. A recognised challenge for rare diseases is the heterogeneity of legacy data sets and the multiplicity of existing registries. EURO-NMD health care providers and patient organizations are currently active in more than 120, mostly disease specific and patient run registries. While the existing registries are collecting important information, none of them is used by all EURO-NMD centres and there is no unified NMD or NMD Disease Specific Registry in EU. The general objective of this proposal is to build a registry hub for all neuromuscular diseases, including undiagnosed patients, and connect with the existing ones. The EURO-NMD Registry Hub will use internationally agreed, state of the art concepts such as being built with a system that will collect standardized common data elements, defined by the Joint Research Center (JRC). It will be registered in the JRC’s meta-registry platform ERDRI, will allow for the generation of a Privacy Preservation Record Link (PPLR) through the EUPID system, it will use internationally accepted ontologies (HPO) and ORPHA codes for codification of the diseases. Development of a registry hub that will allow linking and extraction of data from different sources. Thus, the data collected through the registry hub will be Findable, Accessible, Interoperable, and Reusable (FAIR). The registry hub will offer the unique opportunity to the fragmented NMD communities and their HCPs, Centers, Patients and Patient Organizations to be able to communicate between them and exchange knowledge, experience and news.
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ERN GENTURIS is a European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes (genturis). These patients have a very high risk of developing multiple tumours due to the hereditary nature of these syndromes, which often affect multiple organs and at an earlier age than non-hereditary tumours. Genturis patients with cancer need different treatment and follow-up than patients with non-hereditary cancers. In addition, ERN GENTURIS takes care of the relatives of these patients, for whom prevention and early detection of tumours is of great importance too.
The aim of the GENTURIS registry is to establish a solid and sustainable FAIR central platform that facilitates standardised data registration and sharing of genturis patients’ data across Europe. The registry will consist of a common data registry for all genturis patients combined with disease-specific data registration for all the different thematic disease groups covered by ERN GENTURIS: 1) Neurofibromatosis; 2) Lynch Syndrome and Polyposis; 3) Hereditary Breast and Ovarian Cancer; and 4) more rare and predominantly malignant genturis. Via the FAIR infrastructure of the GENTURIS registry and following international RD and data recommendations, linkage between our registry and other ERN registries and national or RD registries will be possible. Synergies are especially envisioned with ERN ITHACA, VASCERN, Endo-ERN, ERN PaedCan and ERN EURACAN because these ERNs provide both different care and complementary data registration of our target population.
ERN GENTURIS provides high-quality healthcare to more than 42,000 genturis patients and the total number of genturis patients in Europe that stand to benefit from the GENTURIS registry is even substantially more. The GENTURIS registry will provide insights in the disease epidemiology and the natural disease history and will facilitate research to improve diagnostics, treatment and prevention in patients with genturis.
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The general objective of the “Metadata registry for the ERN RITA” (MERITA) project is promoting the interoperability of the RITA network registries so far identified and potentially with the other ERNs, maximizing the adherence of RITA members to the ERDRI platform and developing a new registry for sharing clinical data provided by RITA registries according the European Commission’s Joint Research Centre standards with the unique expertise gained by the PRINTO network is the interoperability of its own registries.
MERITA project will potentially affect quality of life of all the patients with rare immune diseases across Europe and beyond. MERITA project will support the activity of the RITA network that includes 126 members of whom 45 are HCPs and eight are patients and family organizations. In the ERN RITA more than 50 national and international registries enrol more than 55,000 patients from 14 European countries and many others from several other countries outside Europe. The MERITA project will also confront with the project of the other ERNs in order to harmonise as much as possible the different initiatives. The overall outcome will serve also as a reference tools for pharmaceutical companies aiming to develop new target for the treatment of patients with rare immune diseases. Overall aim of the MERITA project is therefore to reach different stakeholders including but not limited to health professionals, patients, patient organisations, other ERNs and industries.

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R-LIVER will build on the registry infrastructure already developed by UKE the coordinating institution for ERN RARE LIVER to provide a European central registry for rare liver diseases. The registry will incorporate high quality and prospectively acquired data from patients with rare liver diseases in order to measure and finally improve the quality of care. In addition, R-LIVER aims to incorporate existing registries for specific rare diseases, thus providing a sustainable, interoperable and centrally managed database of critical mass for rare liver diseases. R-LIVER has already been registered on the ERDRI platform and metadata will be provided within this project to guarantee interoperability with other ERN registries. The structure of R-LIVER will comply with the FAIR data principles to make data findable, accessible, interoperable and reusable. R-LIVER will incorporate existing rare liver disease registries making them ERDRI compliant. Furthermore, new capabilities so to advance the operability of R-LIVER to communicate with patients in order to spread knowledge and import patient reported outcome data into the registry will be developed.
Two methods for including data from external registries will be included. For large volume specific disease registries, the objective will be to import all data from the registry and R-LIVER to become the sole registry. For smaller registries that aim will be to import the central quality of care data. All of these measures will assure that assessment and improvement of health-related quality of life remains central objective. R-LIVER will work with other ERN based registries to determine how data can be exchanged to ensure that there is continuity of care for individuals who may appear on more than one registry.
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A difficulty in treating rare and/or complex craniofacial anomalies and ENT disorders is that there is limited information to substantiate the treatments, doctors, patients and policy makers use and advocate. Current clinical practice varies tremendously within and between European countries, particularly in regards to the timing of treatment and the surgical technique used. This makes cross-country comparisons difficult and because of this, optimal clinical care is difficult to identify.
To overcome this, consensus on a baseline criteria must be established across various member states, and recorded in a common ‘data dictionary’. Next, relevant outcome data must be defined, including their timings and method of recording. Finally, the ERN CRANIO registry will collect standardized outcome data using PROMs and QoL instruments. The outcome data will initially be collected for the two largest diagnostic groups within ERN CRANIO, craniosynostosis and cleft lip/palate.
This project seeks to standardise the collection of patient data across Europe, for the ultimate benefit of patient care. This will help clinicans to identify and provide optimal care which will help to reduce health equalities for patients across Europe.


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There is currently no European registry available to capture core outcome data from patients with the rare and/or complex diseases covered by ERNICA. To improve care across Europe and reduce health inequalities, this is key. Whilst local and national registries exist for some of these rare diseases, there is no standardised approach across Europe. This results in multiple, smaller-scale data sets that are fragmented and not comparable, making it difficult to monitor patient trajectories on a European level, benchmark optimal care and carry out meaningful clinical research.

This project will build upon the existing registry infrastructure in the Netherlands, hosted by the Dutch Institute of Clinical Auditing (DICA). This registry covers six ERNICA-covered anomalies. The objectives of this proposal are to revise the existing registry, implement the JRC Set of common data elements for rare disease registration, expand the registry’s use to other non-Dutch ERNICA healthcare providers (HCPs), achieve inter-operability with other existing registries in Europe, develop a dashboard for data collection and analysis and eventually, make the registry available to non-ERNICA centres.

The registry will involve the prospective collection of a pre-natal, post-natal and longer-term data set (common and disease-specific). ERNICA HCPs will input grouped and un-identifiable data locally. Every 6 months, HCP’s results will be made available to them, alongside group averages. Annually, results will be presented at a board meeting. Benchmarking outcomes will help ERNICA clinicians to identify best practice and improve patient care. A strategy is in place to ensure these learning points are appropriately disseminated.
This project will standardise and pool together relevant and meaningful patient data across Europe, helping to identify optimal, cost-effective care for the benefit of HCPs and ultimately, their patients.
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Under ERN-ITHACA’s umbrella, we plan to develop a single “meta-registry” (ILIAD) of patients with developmental anomalies (dysmorphic/multiple malformations syndromes and/or intellectual disability) recruited in ERN ITHACA, ,patients with several developmental disorders affecting the head recruited by ERN-CRANIO and connective tissue disorders recruited by ERN SKIN. ILIAD will register 3 types of patients: genetically-defined patients (patients must have a genetic/genomic diagnosis to be recorded), clinically defined patients (patients must have a precise clinical diagnosis with a disease-level ORPHA code), and undiagnosed patients. ILIAD will rely on the JRC common data element, enriched by ITHACA specific elements. Effort will also be done to connect ILIAD with external European registries, both professional-driven and patients-driven, and with biobanks.
ILIAD registry relies on 2 components: a central,web-based registry and a network of satellite/client registries linked to the central registry to form the ITHACA registry federation. ILIAD will be build with the existing software solutions from MOLGENIS open source project.. To support findability and interoperability of the ILIAD, the registry will be connected to the European Rare Disease Registry Infrastructure (ERDRI) provided by the JRC, by listing the ILIAD in the European Directory of Registries (ERDRI.dor), making the meta-data available in the Central Metadata Repository (ERDRI.mdr), and using the Pseudonymisation Tool (EUPID) to allow linking RD patients cohorts. In addition, all data will be modelled adhering to international interoperability standards and building on FAIR systems as developed in and coordinated by EJP-RD, Global Alliance for Genomics and Health and Solve-RD, and more generally, Biobanking and Biomolecular Resources Research Infrastructure - European Research Infrastructure Consortium and the European Life-sciences Infrastructure for biological Information.

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This project aims to set-up a clinical registry for the European Reference Network (ERN) on Rare Adult Cancers (EURACAN) which is focusing on 10 out of the 12 families of rare cancers, each corresponding to a EURACAN “domain”.
This project will:
1. Develop the IT infrastructure of the Registry exploiting tools defined by the European Rare Disease Registry Infrastructure. The IT will be interoperable with other rare disease registries and compliant with the FAIR (findable, accessible, interoperable and reusable) principles.
2. Identify the core data set for each of the EURACAN domain. The core data set will include data on patient characteristics, exposure (disease, devices, procedures, treatments etc.) and outcomes. Standard terminology will be used to ensure the “semantic” interoperability.
3. Address ethical, legal and privacy issue to ensure the data collection establishing a legal structure to ensure legal agreements between all partners involved (related to use of data, IP, confidentiality, etc.).
4. Define the Registry governance to clarify the rules and procedures to access and manage the Registry.
5. Develop the sustainability strategy to secure future funding for data acquisition and management at the end of this project.
Different stakeholders including EURACAN members; rare cancer patients; researchers (including all disease-based collaborative groups for clinical and translational research on rare adult solid cancers); scientific societies will be informed and engaged in setting up and, more important, fully use the Registry also after the end of this project.
At the end of the project an infrastructure for the data collection will be available together with rules for transfer, accessing and use the data collected.
Within this project, the EURACAN Registry will start to prospectively collect clinical information on the entire patient journey, in order to increase knowledge on rare adult cancers and to support clinical research.

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The ERN-RND Registry project aims to establish a demographic platform for collection of relevant core patient information. This will be accomplished by the construction and implementation of a single data base encompassing all rare neurological diseases in pediatric and adult patients (the ERN-RND Registry), which will collect information according to the "Set of common data elements for Rare Diseases Registration". The members of ERN-RND provide healthcare to more than 35,000 patients with rare neurological diseases. The proposed ERN-RND Registry will target patients, who suffer from the following rare neurological diseases and conditions: Ataxia and HSP, Leukodystrophies, Frontotemporal Dementia, Dystonia, Paroxysmal Disorders & NBIA, Atypical Parkinsonism and Huntington’s Disease & Choreas. The ERN-RND registry project will pursue three main objectives: 1. The ERN-RND core Registry will be developed using the RedCap database platform that is being operated at University Hospital Tübingen, Hertie Institute for Clinical Brain Research. 2. The second main objective of the project will be to link the central ERN-RND registry with existing hospital databases and disease- or treatment-specific registries. 3. The third objective is the implementation of a continuous monitoring system to follow center performance in terms of care quality and patient outcomes.
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ERN-EYE (represented by Hôpitaux Universitaires de Strasbourg) will transform the current Rare Eye Disease (RED) landscape in Europe, which consists of >24000 patients treated in our centres, suffering from >1000 ophthalmologic conditions, by developing an interoperable, sustainable and high-quality core patient registry for RED (i.e. REDgistry). With REDgistry, we will tackle the issues that impair the currently operational RED registries in the 13 ERN-EYE countries: lack of shared standards, absence of cross-registry interoperability, instable funding, legal uncertainty, inconsistent data quality, and absence of data sharing procedures.

Hence, we aim at i) creating a harmonised high-quality GDPR-compliant registry developed in accordance to the FAIR principles (i.e. Findable, Accessible, Interoperable and Reusable), ii) entering the ad hoc cases while controlling and evaluating the data, iii) ensuring its long-term sustainability, iv) engaging the key REDgistry stakeholders. These objectives will be achieved by 1) establishing a sound governance and long-term sustainability strategy, 2) developing and implementing the IT platform, and 3) entering, cleaning and evaluating the data.
REDgistry will enable the performance of epidemiology studies on RED, improve identification of currently undiagnosed RED patients, increase patient access to novel treatments and clinical trials, and enhance RED research capabilities through international cooperation, knowledge sharing and the future development of interoperable disease-specific registries. The final outputs of the REDgistry project will be an operational basic registry with a common dataset enrolled in the European Rare Disease Registry Infrastructure, a specific ophthalmic dataset, an established governance structure for the registry, a report on the preliminary epidemiology of RED in Europe, a dissemination & communication plan to raise awareness of REDgistry, and a sound economic plan to ensure its sustainability.
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The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) aims to realise improved, harmonised healthcare for people living with rare bone and mineral conditions (RBMCs) across Europe. Our focus includes over 150 severe rare bone diseases that affect cartilage, bones and dentin and more than 40 severe rare diseases affecting phosphate and calcium metabolism. In this project, we will establish the first pan-European registry in RBMCs.

RBMCs constitute a complex group of diseases with evident need for better and more harmonised care. The lack of natural history data is significant, and the quality of care and expertise varies across regions and in many countries is still unclear. Depending on first symptoms and local healthcare processes, a wide variety of healthcare specialists can be involved in the process. Until recently, there was limited cross-disciplinary alignment: each discipline had its own network, conference, guidelines and even registries. The European Reference Network on Bone Disorders (ERN BOND) has taken the lead to better organise the field, to harmonise and improve RBMCs healthcare.
Specifically, in this project, a core group of ERN BOND healthcare providers, affiliated centres and experts will:

• Establish a centralised registry for RBMCs within the scope of ERN BOND in collaboration with the already established European Registry for Rare Endocrine Conditions, EuRRECa, covering a core longitudinal minimal data set to capture their natural history from both clinician and patient perspectives.
• Establish four disease specific modules on Fibrous Dysplasia/McCune Albright syndrome (FD/MAS), Osteogenesis Imperfecta (OI), Rare Hypophosphatemia and Achondroplasia (ACHO), that capture genetic, clinical and patient related outcome measures in a scalable manner to other RBMCs.
• Provide a platform that enables detailed local, disease-specific registries on rare bone and mineral disorders to connect to EuRR-Bone.


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TogethERN ReCONNET, the European Registry Infrastructure for data harmonization in rare and complex connective tissue and musculoskeletal diseases (rCTDs), aims at integrating all existing and newly developed registries on rCTDs across Europe and providing a sufficient number of cases that will help in better understanding the natural course of the diseases, characterizing diseases in the early phases, mapping disease history, identifying different disease phenotypes and distinguishing predictive variables for disease outcomes. Information gathered through the long-term follow-up of a large number of patients will facilitate a better assessment of the clinical problems of patients with rCTDs and may help in determining an improved management of these patients and healthcare planning in general.
The creation of a European Registry Infrastructure on rCTDs is crucial to improve clinical practice and disease understanding in the field of rCTDs and the ERN ReCONNET offers the natural framework for the development of this project, providing an established Network of rCTDs experts, patients and patients representatives, health economists, policy maker and quality assessors.
TogethERN ReCONNET will represent a European Registry Infrastructure integrating both existing and novel registries within the project timeframe. In detail, TogethERN ReCONNET aims at:
• Promoting a harmonised data collection approach on rCTDs in Europe;
• Integrating and implementing existing rCTDs data;
• Improving disease knowledge, clinical management and care provided to rCTDs patients;
• Facilitating rCTDs research, post-authorisation studies and cost-effective healthcare planning.
TogethERN ReCONNET integrates and improves the existing knowledge in the field of rCTDs, addressing the needs of different stakeholders, supporting the improvement of the disease knowledge and management, current and future policies on the treatment and management of rare diseases.
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The main objective of this application is to develop a comprehensive approach for rare disease registration in ERN GUARD-Heart by establishing the first overarching registry of ERN GUARD-Heart (the Heart-Core Registry) using standards and tools provided by the European Platform on Rare Disease Registration (EU RD Platform). To harmonize data and facilitate semantic interoperability, in the Heart-Core Registry a minimal dataset (including the Set of Common Data Elements for Rare Diseases Registration provided by the European Commission’s Joint Research Centre) will be prospectively collected for new patients in the ongoing ERN GUARD-Heart registries and in the future ERN GUARD-Heart registries. In addition, the Heart-Core Registry will signpost users to the detailed disease- or gene-specific ERN GUARD-Heart registries. To render its data more searchable and findable, the Heart-Core Registry will be registered on the European Rare Disease Registry Infrastructure (ERDRI). It is expected that the activities proposed in this application will facilitate ERN GUARD-Heart to reach its goals and specific objectives, create a cost-effective and comprehensive approach of rare disease registration in the ERN GUARD-Heart, lead to increased awareness of ERN GUARD-Heart patient registries and improved reusability of data in these registries among various stakeholders, and enable better interaction among rare disease registries in Europe.
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Croatian Ministry of Health is organising two important events during the Croatian presidency of the Council of the EU in 2020: High level conference on organ donation and transplantation and e-Health Week.
The aim of the high level conference on organ donation and transplantation conference is to engage EU health ministers and national policymakers to:
- provide political support and strong commitment to further developing and strengthening the implementation of successful organ donation and transplantation programmes,
- exchange experience and discuss best approaches aimed at increasing the availability of organs for transplantation
- identify new challenges and priorities for joint action in this area of public health and agree on directions and models for further development
E-Health Week plans to place particular emphasis on taking measures related to actionable health data and secondary use of data by creating the space for European policy making and enabling and implementing uniform European health data standards for interoperability, security, practices for data collection, sharing and ethical processing.


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Objectives: 1.Access to Affordable Medicines 2. Medicines Safety, Added Therapeutic Value and Responsible Use 3. Democratisation of Medicines Policy
Activities:
1: Seek policy support from the Governments of Member States for alternative models of biomedical innovation—delinking R&D costs from the final price of a given medicine—as one component of improving access to currently unaffordable medicines
2: Promote the use of public-health sensitive IP management tools and TRIPS flexibilities in the EU to secure affordable access to medicines and ensure the sustainability of health systems
3: Seek public and high-level government support for initiatives that improve public access to clinical trial data and data on risk biases, and that enhance medicines’ pricing and reimbursement policies that contribute to sustainable health systems
4: Advocate for improved marketing authorisation procedures
5: Continue to engage new cohorts of medical students on the need to respond critically to pharmaceutical promotion, expanding our influence to research facilities and teaching staff
6: Monitor, contribute and react to emerging and ongoing EU policy developments and issue communication and policy materials related to HAI’s areas of expertise
7: Facilitate knowledge exchange on HAI’s areas of expertise to civil society and to new MEPs through the dissemination of recommendations related to EU medicines policy, engagement in meetings and events
8: Strengthen the HAI Europe Association of members to ensure that civil society’s voice is well represented in medicines policy discussions
9: Ensure continuation and transparency of HAI’s work and expand donor relations
We expect to reach over 1000 policy-makers, civil society representatives and members of the research community in the EU through our online and in-person advocacy efforts in 2020. We will produce over 60 outputs in line with the 16 deliverables outlined in our proposal.
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Against the epidemiogical background and evidence that was described in the FPA2018 – 2021, in 2020, AIDS Action Europe (AAE) will continue the work under the three objectives
1. AAE contributes effectively to the HIV, TB and hepatitis response in Europe
2. AAE provides platforms to communicate and facilitate collaboration, networking, and linking and learning
3. Continuous improvement of network collaboration through governance and internal management.
As a comprehensive NGO network of 421 NGOs, national networks, AIDS service organisations, and community based groups in 47 countries in the WHO European Region, AAE will implement its work programme, i.e. with regard to Objective I, to serve as the secretariat to the EU CSF, to monitor and contribute to policy developments, to coordinate the European HIV Legal Forum, and advocate for CS concerns. Objective 2 comprises improved bilingual communication and exchange, intensified social media communication, dissemination of 3rd health programme information and tools, support of national and regional affordability advocacy efforts and provision of capacity building activities. Eventually, objective III includes ensuring topic-related sub-network cooperation, overall governance by the AAE Steering Committee and implementation, monitoring, evaluation, follow-up and fundraising for the work programme.
Herewith we will continue focusing on the following six core thematic areas identified by our members and partners:
- Community based voluntary counselling and testing
- Affordability of medicines
- Tackling legal barriers in the response to HIV, TB and hepatitis
- Criminalisation of HIV non-disclosure, exposure and transmission
- Sexual and reproductive health and rights
- Tackling stigma and discrimination

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The Association of European Cancer Leagues (ECL) provides a unique platform as the only organisation with the mission of uniting at the European level, national and regional cancer leagues to achieve a cancer-free Europe. In coherence with the FPA 2018-2021, this SGA focuses on the core activities to be implemented in 2020 in respect of the following strategic objectives:

1) Informing policy to ensure cancer control remains high on the political agenda;
2) Promoting the European Code Against Cancer (ECAC) as the essential tool for cancer prevention;
3) Supporting leagues in the implementation of the Council Recommendation on Cancer Screening;
4) Uniting leagues to advocate for equal access to treatment, support, and rehabilitation for cancer patients;
5) Advocating for the European Guide for quality improvement in cancer control to be mainstreamed in national cancer plans.

These objectives will be achieved by several actions, including:

- Organisation of the 8th European Conference on Tobacco or Health and publication of the latest Tobacco Control Scale report including data from 38 countries in the European region;
- Implementing the MEPs against Cancer (MAC) European elections manifesto through coordinated actions of the group, supporting four structured meetings of the group;
- Publishing the final report of the systematic evaluation of impact of the European Code against Cancer and informing policymakers and the scientific community of results;
- Enhancing the ECL Youth Ambassadors programme to reach at least 40 European Countries and all EU member states in 2020;
- Supporting the roadmap towards a 3rd implementation report on cancer screening in the EU;
- Publication by the Patient Support Working Group of new guidance and training at the national level to address cancer in the workplace;
- Continuation of the advocacy work of the ECL Access to Medicines Task Force implementing the 2018 'Let's Talk Access' White Paper on Equal Access to Medicines.
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SHE aims to improve the health of children and young people in Europe. By further developing national and regional networks through which SHE members can share good practices, expertise and skills (objective 1), SHE will contribute to strengthen the health promoting school approach in Europe and beyond. Also, the support of professional competence development (objective 2) will further strengthen the approach. Finally, by increasing the visibility of SHE it provides access to information and research-based knowledge (objective 3). This will help creating a platform for policy makers, researchers and professionals to seek inspiration, knowledge and good ideas in order to promote the health of children and young people.
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Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. However, thalassaemia’s prioritisation on national health agendas and the development of national plans for its effective control in the EU has been hampered by the many challenges involved, mainly related to its rarity and migration.

THALassaemia In Action 2020 (THALIA2020) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities:

1. Continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. This is to be achieved via the development of e-learning tools and the launching of capacity building courses and training seminars.

2. Raise awareness on thalassaemia and the importance of optimal care amongst the public at large, as well as among THALIA target groups at national and European level. This will be attained using an array of online tools, activities and publications.

3. Prioritise haemoglobin disorders and their control (prevention and management) at European level. This will be accomplished by establishing and training national patients’ associations in EU priority countries, creating an EU Electronic Health Record and entering into policy dialogue with policymakers at national and European level.

4. Support research programmes and studies focused on the clinical management of Thalassaemia. This is to be achieved via the publication of guidelines on the clinical management of Thalassaemia, participating in scientific conferences and providing fellowships to medical specialists.

Knowledge is our power. Unity is our strength.
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Efforts to mitigate the devastation of tobacco-attributable morbidity and mortality have advanced in Europe and consist of the adoption of the EU Tobacco Products Directive (TPD), and the WHO FCTC. In the face of a changing tobacco product landscape, where dual- and poly-tobacco use has become an increasing public health problem, strategies for addressing the tobacco epidemic must also evolve. Moreover, despite the existence of regulations that are efficacious in reducing the demand for tobacco products, effective implementation remains a persistent challenge across EU MS with an imperative and documented need for regional actions and non-fragmented communication. In light of the above the ENSP 2020 objectives are as follows:
1: To assist and support the central EU level empower capacity at the EU MS National level, for Civil Society with implementing and assessing tobacco control legislation through the provision of scientific evidence and awareness raising
2: To empower capacity at the EU MS level, Civil Society, Policy Makers, clinicians and other stakeholders through the provision of science-based evidence, increased health literacy and improving access to tobacco dependence treatment.
3: To enhance the exchange of tobacco control information across countries, disciplines and generations.
4: To enhance alliances between EU tobacco control stakeholders, to promote sustainability and to ensure the wise use of EU funds.

Results that will be generated include reports on expert mapping, TPD assessment, toolkits, fact sheets, hot topics, guidelines and online modules and information sharing venues. End users and target groups of the 2020 ENSP OG include but are not limited to EU regulators, EU MS regulators, Civil Society, Youth, the Media, the Public, Clinicians and other stakeholders.
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EURORDIS Rare Diseases Europe is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. EURORDIS was founded in 1997 by four patient groups from different therapeutic fields: the Association Française contre les Myopathies (AFM), Vaincre la Mucoviscidose, Ligue nationale contre le Cancer (LNCC), and AIDES Fédération. Today it is supported by its members and by the Association Française contre les Myopathies, AFM- Téléthon, the European Commission, corporate foundations and the health industry.

EURORDIS advocates for people living with rare diseases, supports patient engagement at EMA, as well as in HTA and ERN activities and provides services to patients such as training, information and networking on all aspects of their condition. This is done through several activities such as the EURORDIS Open Academy, the EURORDIS Membership Meeting, the European Conference for Rare Diseases 2020 Stockholm, Rare Disease Day and the European Conference for Rare Diseases which are all EURORDIS initiatives as well as providing tailored communication through the eurordis.org website and EURORDIS regular newsletters, webinars and social media.

The EURORDIS Specific Grant Agreement 2020 continues the work of SGA 2018 and 2019 within the overarching Framework Partnership Agreement 2018-2021. EURORDIS has noted that the envelope of 5M€ has not been increased despite the forecasted costs due to the every second year European Conference on Rare Diseases. As a consequence, we have decided to remove the direct costs of the European Conference for Rare Diseases from this grant. Therefore the amount requested is significantly below the amount indicated for 2020 in the FPA.
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WMDA strives that patients worldwide have equal access to high quality cells for transplantation from donors whose rights and safety are protected. To achieve this the WMDA has implemented a strategic plan for the years 2018-2021.
As an organisation that exists to achieve the best for stem cell donors and transplant patients, the strategy has been co-created with affiliate organisations. The strategy aims to deliver impact in the following areas:
- Optimising ‘search, match and connect’
- Supporting global development
- Promoting donor care
- Ensuring quality

The WMDA aims to facilitate the best possible stem cell source for transplant patients, while the rights and safety of the donors are promoted and protected. This is achieved by:
- setting up a good infrastructure to facilitate communication
- developing education programmes to share best practices
- maintain a platform to report serious adveres events and reactions in as well donors as patients
- promote accreditation and standardisation through the accreditation programme



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The overall objective of Correlation – European Harm Reduction Network (C-EHRN) is to improve the access to and the quality of harm reduction services for PWUDs including other related vulnerable and marginalised people and to enhance policies and practices that increase social inclusion. The strategic objectives, activities and operational targets of C-EHRN are organised in four different pillars: Network, Monitoring and data collection, Capacity building and Advocacy. The network pillar strives to improve and strengthen the overall structure of C-EHRN and creates the prerequisites for the implementation of actions in the other three content-based pillars. These focus on drug use and harm reduction (HR) in general and more specifically on HCV in substance users, new drug trends and drug using patterns and overdose prevention. Activities within the various pillars inform and contribute to each other. C-EHRN activities in 2020 build upon the developments and achievements of the previous years and respond to current challenges. In short, this includes: Network: Further expansion and strengthening of the network, by utilizing the expertise of itsmembers and by involving them actively in the development and the implementation of C-EHRN activities. Monitoring: Enhance the content and the implementation of the C-EHRN monitoring tool, by evaluating the monitoring process and results of 2019 and by improving coverage, outcomes and applicability of the tool. C-EHRN Focal Points (FPs) and our members of the Scientific Expert Group (SEG) will play a major in this evaluation process. Capacity Building: Ongoing collection of resources and tools for the online knowledge and training hub and development of thematic papers, materials and development and organisation of trainings. Advocacy: Identify and analyse relevant policy developments and formulate an updated advocacy strategy for 2020 and 2021. C-EHRN activities and policy recommendations.
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The overarching goal of the SFP Coalition multiannual work programme between 2018 and 2021 is to prevent cancer and chronic diseases through smoking prevention at EU and national level with a special focus on young people and health in all policies. In the third year of the multi-annual programme, the SFP Coalition will work on:

- The multi-annual campaign for raising tobacco excise duties through national and EU-level policy advocacy
- The multi-annual campaign to raise awareness of and support for tobacco control research
- Developing and implementing an awareness campaign towards policy-makers to recognize the crucial role of tobacco control in the prevention of non-communicable diseases and promotion of sustainable health systems in both national health policy and in development policy
- Encouraging civil dialogue by continuing to build capacity of health organisations to engage in the monitoring the EU’s track and trace system and its 2018 strategy and action plan to fight against illicit trade.
- Developing an evidence-based advocacy campaign for strengthening tobacco advertising, promotion and sponsorship regulations at national and EU level
- Raising awareness and building broad support for tobacco control and FCTC obligations amongst policy makers and the health and research community
- Coordinating European civil society positions and activities at the 9th session of the Conference of the Parties to the FCTC and 2nd Meeting of the Parties to the Illicit Trade Protocol, with a view to supporting global advocacy and actionable decisions for civil society in the EURO region
- Monitoring, exposing and rebutting tobacco industry interference (throughout all policy and advocacy work).

SFP will also continue engaging Coalition members in EU level campaigns and supporting national efforts to improve tobacco control policies by strengthening capacity for effective civil dialogue and tobacco control advocacy at national, European and global levels.
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EPHA's 2020 SGA work programme will build on the activities implemented in 2018 - 2019 with a view to attaining the objectives outlined in the 2018-2021 FPA in eight thematic priority areas: NCD prevention, access to medicines, antimicrobial resistance, digital health, healthy trade, access to health and care for disadvantaged groups, financing for public health and capacity building / organisational development. Each thematic priority includes its own operational objective for 2020 and is broken down into activities including milestones and 20 deliverables. Process, output and outcome indicators are provided for the corresponding specific objectives.
EPHA and its members will continue creating synergies between these areas to strengthen the evidence base, identify best practices and enable policy dialogue between the EU and national level. The beneficiaries are numerous: policymakers, civil society and the public. EPHA will support EU policymakers to better respond to the real health needs of ordinary people, while national stakeholders will be able to make better use of EU policies to play a more active role in EU policy-making.
The implementation of the Sustainable Development Goals will be a thread running through all areas given that the issues EPHA is working on are multisectoral, involving both health and non-health stakeholders. We will work to ensure that reducing health inequalities will remain a priority in the context of the European Pillar of Social Rights and European Semester implementation.
A special focus will be placed on advocating public health friendly policies among new EU officials following the institutional renewal process, as well as newly elected MEPs who joined the European Parliament in 2019. This will be important for shaping the post-2020 policy and funding frameworks that will determine the level of attention paid to public health in general and to the inclusion of disadvantaged groups, including in the digital realm.

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The European Public Health Association (EUPHA) is a major player in the European public health area. Since our establishment in 1992, EUPHA has been growing and has an increasing influence on the public health dialogue in Europe.

EUPHA will continue her activities in 2020, fully in line with the 3rd Health Programme of the European Commission. In order to be a leading actor in the public health arena in Europe, we will be introducing a number of new initiatives made possible through the additional funding of the 2020 operating grant. EUPHA identifies the following operational targets for 2020:
1. Strengthening national public health associations;
2. Advocating for public health on the European agenda;
3. Representing the European voice at global level and supporting public health at global level;
4. Providing actively and accurately the evidence to make informed practice and policy decisions in the field of public health;
5. Nurturing the expertise and knowledge on specific public health topics;
6. Preparing the future generation of public health professionals for their leadership role in public health.

EUPHA’s strong organisation, with over 25 years of experience, is a solid basis to contribute to the objectives of the Third Health Programme and to play a key role in the European public health area.
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TB Europe Coalition (TBEC) is the only regional civil society networking, working exclusively on TB in the WHO Europe region and, with 220 members in 35 WHO Europe countries, is uniquely positioned to increase the political will amongst international and regional decision-makers and strengthen necessary capabilities amongst its members to end the TB epidemic across the region.

Despite being preventable and curable, tuberculosis (TB) is the biggest infectious disease killer in the world, with the WHO Europe region being home of 18 high-priorities countries, including the numerous EU Member States. Although global leaders have committed to ending the epidemic by 2030, including reiterating their commitment at the UN High-Level Meeting on TB, the current slow rate of progress means that this will not be achieved for another 100 years at least. It is essential that civil society pushes national governments to ensure that the political commitments expressed at international and regional fora result in necessary and visible changes at the country level.

TBEC has identified health system financing, quality people-centred care and TB R&D and access to existing tools as the key thematic priorities in the region.
TBEC has identified four key objectives for 2020 work plan:
1) well functioning and accountable TBEC governance mechanisms;
2) comprehensive communication and outreach activities, aimed at greater membership participation and collaboration;
3) strong partnerships with key decision makers and relevant civil society networks, working in TBEC priority areas;
4) capacity building activities via exchange visits, country workshops, mentoring programme and webinars.

TBEC's objectives are directly relevant to the four 3rd Health Programme Objectives, DG SANTE and CHAFEA. The foreseen activities will further increase the EU's existing public health knowledge on TB, advance coordinated efforts to fight DR-TB and TB-HIV co-infection, reducing the financial burden.
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In 2020, AE will:
• Ensure that the voices of people with dementia are duly included in all operating grant activities and organise four meetings of the European Working Group of People with Dementia
• Develop a guide for dementia-inclusive meetings, transport and venues building on the expectations and experiences of EWGPWD members
• Collect information on existing training and continuing education programmes existing at national level for health professionals involved in the diagnosis, treatment and care of people living with dementia, produce national reports on the findings and develop a comparative report published in the 2020 Dementia in Europe Yearbook
• Identify legal capacity and the rights of people with dementia in decision-making as the priority of its European Dementia Ethics Network, bring together ethical and legal experts, human rights experts, researchers, policy makers as well as people with dementia and carers in a working group to discuss the findings of the literature review and develop recommendations on the subject to be published in the 2019 Ethics Reporrt
• Continue with the development of its European Dementia Observatory by closely following and reporting scientific and policy developments in the field of dementia in its monthly e-mail newsletter and its website
• Organise a conference in Bucharest, Romania under the motto “Building bridges” from 20-22 October 2020 with the participation of at least 750 participants from 30 European countries
• Carry out a mapping exercise of ongoing EU-funded dementia research projects
• Carry out a membership satisfaction survey to identify the views of AE members on the various activities undertaken under the previous and current Framework Partnership Agreement
• Bring together representatives of the national Alzheimer associations for three networking meetings of the Alzheimer’s Association Academy and organise four Board meetings and one Annual General Meeting.









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WholEUGrain – A European Action on Whole Grain Partnerships

Four countries will be partners in a 3-year project for facilitating the transfer of the Danish best practice model for a Whole Grain Partnership. Other countries get the opportunity to follow the project and to participate in some activities. The overall objectives are to promote good health through healthy diets, prevent diseases, reduce inequalities and establish supportive environments for healthy lifestyles by developing country-based whole grain public/private partnerships.

The primary target groups are public and private stakeholders to be included in the WGP at national levels. Consumers are end-users of activities developed by the partnerships when established.

The proposal focus on the transfer of best practice acknowledging the need for collaboration between countries and added value of interdisciplinary and policy-practice-research collaboration. The proposal further focus on a multicomponent strategy covering structural changes in form of an increase in the availability of healthy whole grain products to the consumers as well as increased knowledge of the health effects of whole grain. A multi stakeholder approach together with such strategy will provide a broad coverage for the whole population, including less resourceful groups leading to reduction in health inequalities. This means that the proposal has the potential to meeting the objects and priorities in the work programme.

The task of transferring the DWGP consist of three phases: Feasibility check, Education and Adaptation leading to the formation of the national WGP’s.

Besides leading to establishment of WGP’s in the countries directly involved the project will provide important knowledge in form of a public updated Evidence Base of the Health Effects of Whole Grain, including sustainability aspects, as well as an EU Guideline for Whole Grain Promotion.
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Ministry of Social Affairs and Health will organise a Presidency Conference on Economy of Wellbeing. The conference is main presidency event for the Ministry of Social Affairs and Health. This high-level conference involves different EU institutions and all the EU Member States; actors from the public sector as well as representatives from non-governmental organizations. We expect around 250 participants.

Health promotion has a major role in increasing economic growth and social and economic stability. This two-day conference will address the interlinkage between wellbeing and economic policies, which are in the best cases mutually reinforcing. Economic growth improves people’s wellbeing whereas wellbeing and health of the population enhance economic growth and stability. The conference is driven by an ambition to introduce a holistic approach of Economy of Wellbeing in order to find a more in-depth and horisontal way to look at the fundamental goal of wellbeing of citizens and to build a more socially sustainable Europe.

The conference will be organised on 18-19 September 2019 in Helsinki. After the conference a conference report will be published and disseminated in the EU level and beyond. Also a publication on Next Steps for EU in promoting Economy of Wellbeing will be produced. The aim is to continue and deepen the cross-sectoral, EU-level discussion on the Economy of Wellbeing approach and to advance the possibility for closer cooperation between wellbeing and economic policies in the EU decision making.

We apply Commission's co-financing for the organisation of the conference as well as for the work to further process and disseminate the theme of the Economy of Wellbeing.
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Cardiovascular diseases (CVDs) are a leading cause of mortality in the European Union causing over 1.8 million deaths per year (EHN Cardiovascular Disease Statistics) as well as a great loss in potential life years.
YOUNG50 project will transfer the Italian best practice CARDIO 50 project in Lithuania, Romania, Luxembourg among 50 years olds.
The objectives of CARDIO 50 were to estimate cardiovascular risk among the 50 years old population, identify persons with inadequate life styles, new cases of hypertension, hyperglycemia and hyper cholesterolemia, activate an integrated model of assistance to help modify or reduce risk factors among healthy subjects, promote interventions to change unhealthy lifestyles and increase knowledge and perceptions of CVD risks among the general population.
The implementation of YOUNG 50 will be divided into 3 phases. Phase1 will assess the feasibility of the implementation in each MSs though a situation analysis and adaptation of the existing materials and IT tools to the local context with support from Spain. In Phase2 the YOUNG50 programme will be piloted in selected regions or cities, with the involvement of health professionals and prevention programs. Phase3 will evaluate the impact of the action and explore its institutionalization.
With early detection, treatment of risk factors and follow up it is envisaged to have results regarding people who receive counseling and improve their lifestyles or medical parameters. Participating countries can beneficiate from the dissemination of the program, since the needs assessment in these countries indicated a need for such a project. Countries can take advantage of transfer and scaling-up of innovative prevention models, including the use of information and communication technology.
Outcomes expected are synergy among prevention programs, inclusion of CVD prevention in Regional or National Health Plan, development of recommendations and Policy Guidelines.
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The SHARP Joint Action will strengthen implementation of Decision 1082/2013/EU, supporting the EU level preparedness and responses to health threats and the implementation of the International Health Regulations (2005). The Joint Action implements actions mentioned in Annex 1 of the Annual Work plan 2018 of the EU Health Programme 2014-2020.
Through the Joint Action, the member and partner states and the Unions common ability to prevent, detect and respond to biological outbreaks, chemical contamination and environmental and unknown threats to human health will be strengthened. Special efforts will be employed to fill gaps that have been or will be identified in priority countries (countries that have biggest gaps in the capacity required for full IHR capability). The Joint action consists of 10 Work Packages, covering core public health capacities according to the IHR (2005). In addition to a coordination function, these will cover areas such as Communication, Evaluation, Sustainability, IHR core capacity, Preparedness, Laboratories, Training and exercises, Chemical threats and Clinical management.
SHARP will also collaborate with several other Joint Actions, specifically the “Healthy Gateways” that addresses Points of Entry, the Joint Action on Vaccination (EU-JAV) and the Joint Action on Antimicrobial Resistance (EU-JAMRAI).
The partnership of the joint action consists of 26 Associated Partners and 33 Affiliated Entities, which all will receive Commission co-funding. In addition there are 9 Collaborating Partners that will self-fund all activities that they participate in. Totally 30 countries (24 EU members, 3 EEA/EFTA members and 3 European neighborhood countries) participate in the Joint Action. The SHARP JA will liaise with and collaborate with the ECDC, the WHO EURO regional office and the WHO Health Emergency and IHR unit in Lyon, and IANPHI in relevant activities. Special emphasis will be made to avoid duplication of work for the member states.

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Topic: Joint Action to strengthen preparedness including laboratories in the EU against serious cross-border threats to health and support the implementation of International Health Regulations (IHR)
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ERN EpiCARE is a network of 28 centres with expertise in the rare and complex epilepsies across 13 countries, developed to enhance diagnosis and ultimate management of these diseases. Complex epilepsies are those requiring multidisciplinary management through a care pathway or for comorbidity, with or without known aetiology, for example the surgically treatable epilepsies requiring a high level of multidisciplinary expertise and diagnostic resource (including video-EEG analysis, functional and/or structural neuroimaging). Delivery of such expertise can be enhanced through the use of e-tools, minimising the need for patients to travel. EpiCARE activities over the third, fourth and fifth years will be targeted at consolidating and further developing the EpiCARE network. EpiCARE aims at improving accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. A care pathway for patients’ referral will be established throughout Europe, and further linkage with national health care networks will be coordinated. Online tools to aid the diagnosis of patients will be established. The development of treatment protocols and the monitoring of standardised outcomes of rare and complex epilepsies will be continued. Awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment will be further improved. There will be a further focus on training and education opportunities. We will also enhance the opportunities for building registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
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SGA proposal year 3 to 5 for ERN RITA.
The overall goal of the ERN RITA is to improve access to high-quality healthcare for patients. To ensure adequate and efficient use of the core service platforms, i.e. the European Reference Networks Collaborative Platform (ECP) and the Clinical Patient Management System (CPMS), an established IT working group focuses on setting up these IT platforms. The developing IT tools are dedicated to e-learning, telemedicine and teleconsultation in order to guarantee the improvement in diagnosis and treatment of rare or low prevalence complex diseases across national borders of European Member States by sharing expertise in complex clinical cases. An Operational Helpdesk, set up by an additional grant and adjusted to the specific needs of ERN RITA, will work in close collaboration with the IT Working Party.
The informed consent form from the EC is in line with the European data protection standard to share health data within the ERNs to develop diagnoses and care plans. All HCPs need to check the provided consent form with their national or local authorities’ practices and combine the consent form with local standards if necessary. In most countries this is already done. The consent form and guidelines are available in the CPMS. These have been crafted with the GDPR in mind and has been considered a best-practice by the European Data Protection Supervisor (EDPS). It complies with the general data protection requirements in EU data protection law for consent.

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EURO-NMD is a clinically oriented approach to the thematic grouping of neuromuscular disorders that builds on many years of networking experience in the NMD field. NMDs include a broad group of diseases with overall prevalence of 1/3500-1/2500 that represent a major cause of mortality and morbidity in children and adults. Their rarity and diversity pose specific challenges for healthcare provision and research. While individually rare, NMDs collectively affect an estimated 500,000 patients in Europe and result in life-long disabilities with significant costs for families and the healthcare system. Regional and national differences in care and incomplete implementation of standards lead to international disparities and divergent outcomes for NMD patients. NMD patients often lack timely and accurate diagnosis, and this impacts on survival and quality of life. Even patients with a condition diagnosable with existing gene tests typically wait 7 years for diagnosis – EURO-NMD aims to decrease time to diagnosis through implementation of diagnostic guidelines. A further 30% may remain without a confirmed genetic diagnosis after extensive testing. Through next-generation sequencing EURO-NMD aims to diagnose a further 15% of patients within the 5-year period. The ERN is a partner in the SOLVE-RD project that aims exactly at solving the unsolved cases and is also a partner in the EJP-RD. NMDs require a multidisciplinary team experienced in the specific clinical needs of the conditions comprising the ERN sub-groups: muscle, nerve, motor neuron, mitochondrial and neuromuscular junction diseases. During the last 2 years the working groups have collected and endorsed guidelines and standard operating procedures in collaboration with the learned societies. For the future the ERN aims to increase the teaching initiatives either through teaching courses, e-learning activities or supporting the networking of young professionals.
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This proposal supports the European Reference Network (ERN) in rare hepatological disease. Liver disease is a major and growing problem in the European population. The expansion in clinical need because of increasing disease impact has not been matched by expansion in the clinical workforce leading to a relative lack of expertise. The ERN model is attractive for rare liver disease as it fosters the development of "virtual critical mass" across European centers with benefits in terms of clinical care delivery, teaching, training and research capacity. The ERN covers both adult and paediatric patents in the disease groupings (Autoimmune Liver Disease; Metabolic Biliary Atresia and related diseases; Structural Liver Disease) with a coherent plan to increase both disease scope and geographical coverage. Patient care will be improved through work on guidelines, care pathway development and the use of the Clinical Patient Management System for multi-centre discussion of complex cases. We also facilitate improvement in diagnostics capacity through development of quality assurance programmes in serology and hisopathology and case referral pathways to support centres lacking diagnostic technology. Our training and research programmes will enhance care delivery through increase in the trained workforce and knowledge respectively.
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Birth defects may result in death, chronic illness or long term disability with a significant impact on individuals, families, health care systems and societies. Many birth defects are also associated with intellectual disability as part of rarer patterns or syndromes and require multidisciplinary care. More than 8000 rare syndromes have been described. Thus although rare these are collectively important conditions. They may have genetic, environmental and multifactorial causes but in 50% of cases the cause is currently unknown. Identifying causes and studying the natural history of multiple anomaly syndromes and rare forms of syndromal or non-syndromal intellectual disabilities guides management or treatment, provides answers for families and healthcare professionals, furthers understanding of normal development through research and may lead to prevention. All of these will have significant health economic benefits and guide commissioning of future services. However, expertise in the study of these conditions is limited to a few experts, in major healthcare centres. In some EU member states the specialty of syndrome diagnosis and management is not well established, there is no specialist training and there are few clinical and laboratory resources. We propose to continue the patient-centred European Reference Network for Rare Malformations and Intellectual Disability, ITHACA, which aims to meet the needs of patients, both diagnosed and undiagnosed. ITHACA works to improve access to diagnostic expertise by utilizing an innovative telehealth approach and guiding quality assured diagnostic testing.
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CRANIO - This proposal outlines the activities of ERN CRANIO for the years 2019, 2020 and 2021, which are line with the FPA. ERN CRANIO aims to support specialised centres across Europe to provide care of the highest quality to patients with rare and/or complex craniofacial anomalies and Ear Nose and Throat (ENT) disorders. The network seeks to connect the most highly specialised centres in Europe so that professionals can share their knowledge and best practice. It also seeks to connect patient groups across the continent. It is hoped that the pooling of resources and expert information from both patients and professionals will facilitate access to high quality, multidisciplinary care for all European patients. The focus of the next 3 years will be; Expansion of the network across Europe (both healthcare providers and patient groups), development of disease-specific standards of care, initiation of a quality improvement cycle so that ERN-accepted standards of care can be monitored and refined, data collection and benchmarking via use of a registry, organisation of professional training, collaborative, multi-centre research and full implementation of the Clinical Patient Management System. Disseminating information on the network and its outputs to target groups will be crucial, in addition to evaluating progress.
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EUPAP - An European Physical Activity on Prescription model

Organisations from ten EU member states will be partners in this 3-year project for facilitating the transfer of the Swedish best practice model for physical activity on prescription (FaR). The overall objectives are to promote good health and to prevent of non-communicable disease through implementing country-based physical activity on prescription (PAP) programs in health services in several countries.

This proposal focus on this transfer of best practice acknowledging the need for collaboration between countries and added value of interdisciplinary and policy-practice-research collaboration. The health service is an excellent arena for health promotion due to its coverage and access for the whole population. The prescription of physical activity is a method that can reach and enable different population groups enhancing their physical activity for prevention and treatment of non-communicable diseases. Moreover, given access to health services this includes also socially disadvantaged groups leading to reduction in health inequalities. This means that the present proposal has the potential to contribute to meeting the objects and priorities in the work programme.

Target groups are organisations, stakeholders and end-users included in the local implementations. Target groups for dissemination will be health care educators and practitioners, physical activity suppliers, as well as patients and the general public. Special emphasis will be placed on involving policy and decision makers from authorities at national, regional and local level. Research points towards a social gradient in physical activity. Initiatives that have significant effect on social equity and equality are therefore crucial in this project.
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ERN-EuroBloodNet is conceived to contribute to innovative, efficient and sustainable health systems and facilitate access to better and safer healthcare for EU citizens while decreasing the cross-border health barriers existing for information, samples and patient mobility in Rare Hematological Diseases (RHD). Accordingly, the previously established state-of-the art on RHD needs allowed the implementation of concrete strategies for the next three years. The repository of experts and facilities will be expanded for a) obtaining accurate information on very rare haematological diseases (VRHD) and highly specialized interventions and b) increasing data robustness on members’ activity and clinical outcomes. Data exploitation will provide the evidence for elaborating Policy reports addressing needs at the national level while facilitating better use of resources. In some cases, this will lead to a cross-border issue, a legal policy report will be produced based on practical cases. Best practices will be promoted by the maintenance of the public database of international clinical practice guidelines. It will also include classification according to quality domains and assessment of implementation. Also, development of new External Quality Assessment Schemes for core laboratory tests will be promoted. Target-driven synergies will be established with educational bodies to address gaps in the most efficient manner. Different actions are contemplated channelled not only to increase multidisciplinary teams training but also to foster patients’ empowerment. In the field of inter-professional consultations, specific efforts on CPMS promotion among members will be dedicated. Epidemiological surveillance of VRHD will be facilitated by the development of GeoCodes including number of patients and diagnosis facilities. Lastly, actions will be taken to enhance members’ involvement on CTs for hardly accessible drugs for VRHD and to promote research collaborative projects.
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ERNICA – This European Reference network aims to support specialised centres across Europe to provide care of the highest quality to patients with rare, inherited and congenital anomalies. These diseases are often low prevalence and complex. The network seeks to connect the most highly specialised centres in Europe so that professionals can share their knowledge and best practice. It also seeks to connect patient groups across the continent. It is hoped that the pooling of resources and expert information from both patients and professionals will facilitate access to high quality, multidisciplinary care for all European patients. The focus of the next 3 years will be; Expansion of the network across Europe (both healthcare providers and patient groups), development of disease-specific guidelines, consensus documents and ‘patient journeys’, data collection and benchmarking via use of a registry, organisation of training and development of training resources, multi-centre research and full implementation of the Clinical Patient Management System. ‘Fetal Medicine’ has been added as an additional work package and there are plans over the next 3 years for pre-natal guideline development and the establishment of an ERNICA pre-natal care network.
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The ERN ReCONNET 3-year Work Plan will set the stage for crucial achievements in the field of rare ad complex connective tissue diseases (rCTDs), allowing the Network to address its main commitment: the benefit of patients affected by rCTDs.
As the aim of the 3-year program is to establish, coordinate and manage patients and HCPs communities and to pool knowledge and expertise across the EU, all the target groups will participate in all the activities planned. Specifically, the main target groups are represented by: patients, caregivers and families, HCP members, healthcare professionals, scientific societies.
The main activities that will be carried out are related to the coordination and management, empowerment and engagement of patients, families and caregivers, sharing of best practice, training and e-learning, research and innovation knowledge, dissemination and networking and sustainability.
The expected results of the activities of the next three years will be represented by the availability of specific tools aimed at harmonizing the clinical and economical approach to rCTDs and at creating minimum standards of healthcare services essential for the management of rCTDs across Europe and providing a crucial impact on the lives of more than 500.000 people affected by rCTDs.

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3rd - 5th Annual Work Program for the ERN TransplantChild - Transplantation in Children, both Solid Organ Transplantation
and HSCT
Description of activities planned for the developement by the coordination of the third to fifth year of the ERN TransplantChild. 18 Health Care Providers from 11 different European countries
The general objectives are:
A. The identification of key aspects for the complete development of the Network and the development of actions for the joint achievement of the Network objectives:
B. The support and coordination of the Network activities.

The outputs we plan to obtain are related to report and analysis of key aspects related to paediatric transplantation, with a great impact in patients, families and professionals involved in the care of this patients.
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MetabERN is the first pan-European metabolic network that aims to facilitate access to the best available care for patients with rare inherited metabolic diseases (IMDs).
MetabERN represents today 69 founding Healthcare Providers (HCPs) from 18 EU Member States and 44 patient organisations (POs), and is endorsed by the Society for the Inborn Errors of Metabolism (SSIEM).
In line with the objectives and services defined in the proposal for a Framework Partnership Agreement, MetabERN aims to continue optimising the programmes centred on high-quality patient care. In particular MetabERN will: 1) strengthen the collaboration between participating HCPs and patients; 2) increase awareness of hereditary metabolic diseases in relevant communities; 3) develop dedicated educational and training programmes to address the identified HCPs’ and patients’ needs; 4) develop guidelines and clinical pathway recommendations on IMDs; 5) optimise the use of the Clinical Patient Management System (CPMS) and other service platforms to advance cross border collaboration for optimal diagnosis and treatment of rare IMDs; 6) analyse the state-of-play in IMD diagnosis and care; 7) ensure systematic involvement of patient representatives in MetabERN activities, and 8) put in place an efficient monitoring system for quality assurance of the overall execution of the three-year plan. To demonstrate the crucial importance of patient involvement and participation, a dedicated work package has been included in the work plan.
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This is the VASCERN Specific Grant Agreement for Year 3 to Year 5 under the Framework Partnership Agreement. VASCERN Network Coordinator is Prof. Guillaume JONDEAU, Cardiologist at the Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Bichat-Claude Bernard, CRMR (Center of Reference) Marfan Diseases and related disorders. VASCERN aims to facilitate and improve diagnosis, treatment and care for all patients suffering from rare multisystemic vascular diseases.
The European Reference Network on rare multisystemic vascular diseases (VASCERN) gathers European highly specialized multidisciplinary Healthcare Providers (HCPs) in this thematic area of expertise.
VASCERN includes 5 Rare Diseases Working Groups (RDWGs):
- Heritable Thoracic Aortic Diseases (HTAD-WG)
- Hereditary Haemorrhagic Telangiectasia (HHT-WG)
- Medium Sized Arteries (vascular Ehlers Danlos) (MSA-WG)
- Pediatric and Primary Lymphedemas (PPL-WG)
- Vascular Anomalies (VASCA-WG)
The specific VASCERN Patient Group (ePAG) enables Patient representatives to work on common issues and to be
involved in all activities.
In addition, several transversal Working Groups work on eHealth, Training & Education, Patient Registry,
Ethics, Communication / Dissemination.
Our Action Plan will enable VASCERN to carry on with its work and reinforce its activities with
regard to various Work Packages detailed in this project proposal.
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The main ambition of the ERN BOND is to implement measures that facilitate multidisciplinary, holistic, continuous, patient-centred and participative care provision to people living with rare bone diseases (RBD), supporting them in the full realisation of their fundamental human rights. To meet this goal, BOND gathers European professionals highly specialized in the field of RBD for both scientific research and multidisciplinary care to increase knowledge on RDs, to improve healthcare quality and patient safety, to increase access to ultra specialized medical expertise and accessible information beyond national borders. ERN BOND aspiration is to support patients affected by RBD and their families, to increase their capacity to undertake a participative role in care provision, to set priorities and to participate in decisions regarding their care plan and their life project. BOND will bring rapid interchange of information, skills and practice to shorten time to diagnosis, and treatment, in collaboration with Patients Representatives (ePAGs). Efforts to target less developed affiliate partners, where the gap between existing provision and that aspired to through BOND is largest, will be carried, meeting the target of improving healthcare in ALL Members States.
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The mission of ERN-PAEDCAN is to improve outcomes of childhood cancer and malignant haematological diseases by reducing the current inequalities in different member states. Comparative population-based cancer registry research has provided robust evidence for significant inequalities in survival from childhood cancer across Europe: the difference may be as much as 30% units, with worse outcomes in Eastern Europe. Despite a reduction in the geographical differences in the period 2005–09, the former socialist economies still have roughly 20% excess mortality from cancer in children compared with the rest of Europe. In its second year ERN-PAEDCAN aims to continue to provide paramount requirements for ‘Cross-border healthcare’ allowing the provision of healthcare to children with cancer in a Member State other than the Member State of affiliation. We identify target groups with conditions requiring a particular concentration of resources or expertise, especially when the expertise with certain cancer conditions is rare and case volume low. Taking into account the potential burden on families seeking cross border health care ERN-PAEDCAN intends to establish mechanisms to facilitate movement of information and knowledge rather than patients. We aim to extend local and national ‘tumour board’ culture to the cross border level with identified and required ICT tools and eHealth networks. High-quality, accessible and cost-effective healthcare for childhood cancer are achieved by strengthening the integration of pre-existing knowledge and expertise, and fostering stronger cooperation between patients, professionals and healthcare authorities. The innovative contribution of ERN-PAEDCAN is a clear roadmap to approved expert referral sites and tumour advisory boards for healthcare providers fulfilling our vision of a more supportive environment for children with cancer with special needs by integrating pre-existing networks and knowledge across borders.
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Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. The actions, as defined in our 5-year plan (FPA), are geared at mitigating differences in awareness and knowledge, supporting and informing research, connecting various (types of) stakeholders and making agreements in support of excellent care. The work plan is subdivided in 5 work packages containing phased activities aimed at 8 main thematic groups. After sculpting a coherent network in Y1, key initiation actions are currently being addressed. While the platform has not reached its full functional state yet it will be operational for most of the intended purposes within Y2. This functional network will have the requirements of troubleshooting and adaptations, which will be the focus of Y3, while Y4 will be centred around internal benchmark activities. Y4 will make any gaps in the network evident that may have been overseen before the transition from a theoretical to an operational network. The Y3-4 actions under the proposed SGA will result in the integration of 5 WPs and 8 MTGs to a point of functional operations. Key features include ability to perform virtual consultations, MTG-based e-learning, endocrine overarching research strategy/agenda in line with endocrine societies, effective matching of patients and expert labs for optimal care. The final period of the framework period is geared towards mechanisms to ensure quality (of activities, outcomes and added value, and members and their efforts) as well as sustainability. For this, Endo-ERN develops internal processes and also aims to collaborate with other stakeholders (ERNs, European Commission, national ministries of health, etc) to coordinate actions for quality assurance and sustainability. It is our mission to abolish inequities in care for paediatric and adult patients and for patients in transition. This final program will ensure this mission is implemented to make it a mainstay in the European healthcare ecosystem.
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The European Reference Network for Rare Kidney Diseases (ERKNet) will offer highly specalised healthcare to children and adults suffering from congenital and acquired glomerulopathies, tubulopathies, metabolic and stone forming nephropathies, thrombotic microangiopathies, renal ciliopathies and other anomalies of kidney and urinary tract development. The Network comprises almost 40 centres in 12 European countries with specific expertise documented by large patient numbers (collectively more than 45,000), state-of-art diagnostic services and therapeutic equipment and professional multidisciplinary care. The Members will share best practices by offering physical and virtual cross border consultation, series of educational workshops and webinars, e-learning modules on focused rare kidney disease topics, short-term training opportunities, and by endorsing existing and developing new clinical practice guidelines and recommendations wherever needed. In collaboration with the patient organisations, the Network will collect informational materials on all rare kidney diseases and their treatments and make the documents available in multiple languages to affected families throughout Europe. Furthermore, ERKNet will strive to harmonize and further optimize patient care across the Member centres by regularly monitoring and benchmarking guideline adherence, disease-specific performance and outcomes measures, as well as patient safety and satisfaction. Another important goal of the Network will be to actively support clinical research into risk factors and biomarkers of early and severe disease phenotypes, and provide a platform for innovative interventional clinical trials aimed at improving or stabilizing kidney functions and preventing progressive renal failure in adults and children with rare kidney diseases.
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Built in close collaboration with patient associations, ERN-EYE is focused on rare eye diseases (RED) and involves 29 Hospitals in 13 Member States of the European Union (EU). ERN-EYE first and second year’s activities have been mainly focused on an inventory phase. The first major achievement has been to collectively revisit the ontologies concerning rare eye diseases (with ORPHANET and Human Phenotype Ontology). The second main action was the implementation of the virtual clinic driven by the European Commission tools with an ophthalmic customisation and launched during 2018. This will improve the care of patients with rare eye diseases across the EU.

The last 3 years of this project will entail the coordination of continued activities that have been launched in year 1 and year 2. Currently, many activities are being covered, such as the evaluation of genetic testing across EU and how to improve it, the development of a basic ERN-EYE registry, the development of research projects within the specific working groups topics (retina, paediatric ophthalmology, anterior segment, neuro-ophthalmology). Continuing this progression, ERN-EYE will improve its dissemination activities, especially towards patients and general public with particular effort to spread support in all ERN-EYE members EU languages to ensure the best accessibility for all. Finally, particular attention will be given to the evaluation & assessment of ERN-EYE activities.

The years 3 and 4 should bring full implementation and the last fifth year will be a consolidation year ensuring sustainability of the network and the settings developed during these 5 years for highly specialized patient care. The active involvement and support of patient groups through ePAGs is a highly valuable and continuous strength.

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ERN GENTURIS is a European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes (genturis). These patients are at very high hereditary risk of developing multiple tumours, which are often located in multiple organ systems. In case they are diagnosed with cancer they need different treatment and follow-up as compared to non-hereditary cancers. In addition GENTURIS takes care of the relatives of these patients, for which prevention and early detection of tumours is of great importance too.

WHAT IS OUR MISSION: To inspire hope and contribute to health and well being by organizing and providing the best care to every patient in Europe with a genetic tumour risk syndrome through integrated multidisciplinary healthcare, guidelines, education and research.

WHAT IS OUR DESIRED END-STATE: Striving to be the world’s leader of genetic tumour risk syndromes in patient participation, clinical care, research and education.

ERN GENTURIS is addressing the following challenges when it comes to the identification, genetic testing, tumour prevention and treatment of patients with genturis: 1) Great majority of genturis patients are not yet identified 2) Large variation in clinical outcomes resulting in impaired prognosis and avoidable costs 3) Guidelines are lacking or implemented insufficiently 4) Almost no patient registries and biobanks 5) Limited research programs 6) Fragmented patient empowerment activities.

There are 4 thematic groups of syndromes: 1: Neurofibromatosis type 1, 2 & Schwannomatosis. 2: Lynch syndrome & polyposis. 3: Hereditary breast & ovarian cancer. 4: Other rare - predominantly malignant - syndromes. The last group includes syndromes not covered in the other groups. It is a heterogeneous group with very small numbers of patients that will benefit greatly from a centralized approach. Within the next years not yet covered as well as newly discovered genturis will be included as well.
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ERN-RND is a network of 32 Healthcare Providers from 13 EU member states. ERN-RDN builds on existing expert centres and mature networks dedicated to rare neurological diseases (RND) as well as established rare disease infrastructures such as Orphanet, EURORDIS and RD-Connect. Through coordination and knowledge transfer, ERN-RND shall establish a patient-centred network to address the needs of patients with RND of all age groups, with or without a definite diagnosis, by implementing an infrastructure for diagnosis, evidence-based management, treatment and collection of patient data. The network will develop, disseminate, implement and supervise best practice guidelines and care pathways to optimize patient care and facilitate training and capacity building in the field. A special effort will be aimed to member states with less developed infrastructure for caring for RND patients, where no current partners are located, or with only affiliated or collaborative partners. ERN-RND will inform planning of European and national health care in RND, facilitating translation of research activities into clinical practice and the development of future therapies. Keeping in line with ERN-RND’s strategic objectives the seven most important operational targets for year 3-5 are:
• Role-out of CPMS in ERN-RND for disease group specific use cases
• Define responding strategies for disease groups specific most important care needs for RND in the EU
• Implement EQA scheme for genetic diagnosis of RND
• Together with the European Academy of Neurology put in place process for development of RND clinical practise guidelines
• Implement ERN-RND training program consisting of training workshops, fellowships and e-learning
• Demonstrate value of RND registries for trial-readiness
• Establish ERN-RND web-site as THE European RND disease knowledge hub

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The mission of ERN GUARD-Heart is to facilitate access to highly specialised diagnosis and treatment of rare and complex heart diseases in both adult and paediatric patients across the European Union. ERN GUARD-Heart started with a geographically diverse group of 24 expert healthcare providers from 12 different Member States committed to patient-centred care, efficient practice based on evidence, knowledge sharing and education, and translational research.
The initial focus is on genetically transmitted heart disease and several specific procedures in paediatric patients. By pooling knowledge and expertise, ERN GUARD-Heart network members aim to provide better, safer, more efficient healthcare to all European patients with rare and complex cardiac conditions on the basis of the best evidence and value available. To achieve this purpose, the network members have defined a common strategy oriented by the following principles:
• To generate, share and spread knowledge and evidence in the diagnosis and treatment of rare/complex heart diseases within and outside the network.
• To implement processes of healthcare delivery focussed on clinical outcomes and patient experience while maximising the cost-effective use of resources.
• To develop internal benchmarks and best practices to advance the quality and safety of care processes within and outside the network.
• To ensure cross-border accessibility to safe high quality healthcare to patients affected in all countries of the European Union.
• To promote innovation and translational research in the area of rare and complex diseases.
Healthcare Providers (HCPs) that participate in the Network are reference centres with accredited expertise in the provision of a wide range of services, including prevention (counselling and genetic screening), acute care, outpatient care, diagnostics, interventional therapeutic services, rehabilitation, social care services, palliative care, and family support.

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ERN-LUNG is a network of European patients and healthcare providers dedicated to ensuring and promoting excellence in care and research to the benefit of patients affected by rare respiratory diseases. ERN-LUNG’s vision is to be a European knowledge hub for rare respiratory diseases and to decrease morbidity and mortality from rare respiratory diseases in people of all ages. ERN-LUNG is a European Reference Network (ERN), a non-profit, international, professional, patient centred network. ERN-LUNG is focused on rare respiratory diseases and is made up of nine core networks representing the diversity of diseases and conditions affecting the lungs. The current core networks (sub-thematic areas) are interstitial lung diseases, cystic fibrosis, pulmonary hypertension, primary ciliary dyskinesia, non-CF bronchiectasis, alpha1-antitrypsin deficiency, mesothelioma, chronic lung allograft dysfunction, and other rare lung diseases. In addition to the sub-thematic groups, ERN-LUNG is also organized in functional committees tackling horizontal topics, affecting all of the current and future core networks of ERN-LUNG. These functional committees are Research and Clinical Trials, Ethical Issues, Registries and Biobanks, Patient Recorded Outcomes and Quality of Life, Quality Management, Physical Fitness and Training, Social Services, Guidelines and Best Practice of Care, Communication and Outreach, Cross Border Care, and Professional Training and Continued Medical Education. In building up on and learning from mature networks of recognized international excellence, ERN-LUNG will continue to grow, to establish registries and clinical trial networks, and add value for patients, healthcare providers, and professionals through dissemination of knowledge, enhancement of general expertise by learning from the best centres in rare respiratory diseases in Europe, and improvement of standards of care, quality of life and prognosis for the whole spectrum of rare pulmonary diseases.
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Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are over 300 rare cancer types which may affect all organs. A variety of histological and molecular subtypes are emerging following the progresses of genomic classifications. EURACAN is a patient centred ERN dedicated to the improvement of diagnosis, treatment management, knowledge, research and communication on all adult solid rare cancers for patients, families, physicians and all stakeholders. EURACAN will work on excellence guidelines, their implementation, innovation, research, patient pathways, cross border health care, and patient communication. EURACAN gathers 67 centres from 18 EU countries. These centres were identified on the basis of documented expertise, accrual in rare cancers, and endorsement by their member state. EURACAN aims to open to additional centres, to expand to all EU countries and to host at least health care provider expert for a domain for a region of 5-10 million inhabitants. EURACAN has also invited associated partners from major scientific societies, ESMO, ECCO, ESSO, EORTC, and major patient advocacy groups to participate to the different network bodies. EURACAN will interact with other ERN with related topics, in particular benign conditions. In EURACAN, rare adult solid cancers were grouped in 10 domains corresponding to the RARECARE classification: sarcomas, rare gynaecological cancers, rare urological cancers, neuroendocrine tumors, rare digestive cancers, endocrine tumors, rare head and neck, thoracic, skin, ocular and brain cancers. EURACAN will propose a unique network to all European patients affected with rare cancers in all member states enabling an optimal care, access to rare resources, education, innovation and research to all EU patients.
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The ERN-Skin 3-year proposal for third to fifth year of the Framework Partnership agreement (FPA) n°739505 implementation builds upon the ERN-Skin year 1 and 2 achievements. It takes into consideration the recent development of the ERN IT platform (ERN Collaborative Platform and Clinical Patient Management System - CPMS) and the EU policy on ERN. The goals and activities are coherent with the ERN-Skin multiannual plan included into the FPA . By pooling expertise, the planned activities will contribute to achieve the ERN-Skin multiannual goals:
• Strengthen the ERN-Skin operational framework thanks to regular meetings of the ERN-Skin bodies, the management of the Brexit consequences and the integration of members or affiliates
• Cover the largest possible number of diagnosed but also undiagnosed rare and low prevalence skin disorders so that every patient finds a home in the ERN-Skin
• Provide reliable information on diseases and services thanks to the interactive directory update
• Further develop multidisciplinary management and facilite the mobility of expertise thanks to CPMS and cooperation with other ERNs and scientic societies
• Share and spread harmonized best practices thanks to the adaptation and development of guidelines and recommendations for health care professionals
• Develop health care professional skills thanks to courses, e-trainings and practical trainings
• Empower patients thanks to the development of specific patient education programmes
• Involve Member States with insufficient number of patients or lacking technology or expertise thanks to support to attend courses and access CPMS
• Develop, test and use of the Skin Phenotyping Ontology and Terminology App
• Issue recommendations for an ERN-Skin registry
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The EURIPID Collaboration operating since 2010 is a voluntary collaboration of the European authorities in charge of pricing and reimbursement of pharmaceuticals for the mutual sharing of information related to the pricing of medicinal products via an online accessible up-to-date, and comprehensive database including the vast majority of EU Member States. The current proposal aims at supporting the voluntary cooperation between the national authorities by continuing the information provision on the existence of managed entry agreements, prices and sales volumes of reimbursable medicinal products, by enhancing the services to the users and also to general public and by strengthening the cooperation in the field of pricing of medicinal products between the national authorities and the stakeholders of the pharmaceutical sector, with a special focus on the European Medicines Agency (EMA), the European Medicines Verification Organisation and Eurostat.
The proposal foresees the creation of enhanced public interfaces of the EURIPID website and the establishment of regular newsletters so that the Collaboration will share more information about its activity with the general public; the spreading of the recommendations of the technical Guidance Document which are going to be prepared jointly by the national competent authorities and the stakeholders; the extension of the data content of the database to non-reimbursed but regulated priced products.
The terms of a formalised cooperation with the stakeholders will be defined so that the regular platform for information exchange will be established. The platform will discuss the options for the extension of the access to the EURIPID website, the options for sharing real price information between the Member States and the possibilities of cooperation between the EURIPID Collaboration and other ongoing projects like Article 57 database of EMA and the European Medicines Verification System.

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EURORDIS Rare Diseases Europe is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.
EURORDIS was founded in 1997 by four patient groups from different therapeutic fields: the Association Française contre les Myopathies (AFM), Vaincre la Mucoviscidose, Ligue nationale contre le Cancer (LNCC), and AIDES Fédération.
Today it is supported by its members and by the Association Française contre les Myopathies, AFM- Téléthon, the European Commission, corporate foundations and the health industry.

EURORDIS advocates for people living with rare diseases, supports patient engagement at EMA, as well as in HTA and ERN activities and provides services to patients such as training, information and networking on all aspects of their condition. This is done through several activities such as the EURORDIS Open Academy, the EURORDIS Membership Meeting, Rare Disease Day and the European Conference for Rare Diseases which are all EURORDIS initiatives as well as providing tailored communication through the eurordis.org website and EURORDIS regular newsletters, webinars and social media.

The EURORDIS Specific Grant Agreement 2019 continues the work of SGA 2018 within the overarching Framework Partnership Agreement 2018-2021. EURORDIS has noted that the Call for SGA 2019 has an envelope of 5M€ vs 5.8M€ in 2018. As there is uncertainty as to the approach that should be taken with respect to this application, we have decided to keep a consistency with the FPA 2018-2021 and as such to include the activities and the budget as these were presented in the FPA. We hope that this approach will give CHAFEA the maximum flexibility to take decisions on the allocation of the OG envelope amongst the FPA 2018-2021 participants.
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Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. However, thalassaemia’s prioritisation on national health agendas and the development of national plans for its effective control in the EU has been hampered by the many challenges involved, mainly related to its rarity and migration.

THALassaemia In Action 2019 (THALIA2019) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities:

1. Continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. This is to be achieved via the development of e-learning tools and the launching of capacity building courses and training seminars.

2. Raise awareness on thalassaemia and the importance of optimal care amongst the public at large, as well as among THALIA target groups at national and European level. This will be attained using an array of online tools, activities and publications.

3. Prioritise haemoglobin disorders and their control (prevention and management) at European level. This will be accomplished by establishing and training national patients’ associations in EU priority countries, creating an EU Electronic Health Record and entering into policy dialogue with policymakers at national and European level.

4. Support research programmes and studies focused on the clinical management of Thalassaemia. This is to be achieved via the publication of guidelines on the clinical management of Thalassaemia, participating in scientific conferences and providing fellowships to medical specialists.

Knowledge is our power.
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The Association of European Cancer Leagues (ECL) provides a unique platform as the only organisation with the mission of uniting, at the European level, national and regional cancer leagues to achieve a cancer-free Europe. In coherence with the FPA 2018-2021, this SGA focuses on the core activities to be implemented in 2019 in respect of the following strategic objectives:

1) Informing policy to ensure cancer control remains high on the political agenda;
2) Promoting the European Code Against Cancer (ECAC) as the essential tool for cancer prevention;
3) Supporting leagues in the implementation of the Council Recommendation on Cancer Screening;
4) Uniting leagues to advocate for equal access to treatment, support, and rehabilitation for cancer patients;
5) Advocating for the European Guide for quality improvement in cancer control to be mainstreamed in national
cancer plans.

These objectives will be achieved by several actions, including:
- performing a survey of national contact points to update the triennial tobacco control scale;
- securing the re-establishment of the MEPs against Cancer (MAC) group in the next mandate of the European Parliament;
- publishing a policy framework of supportive actions to implement the European Code against Cancer;
- developing a web portal on cancer screening to be hosted on the ECL website (www.cancer.eu);
- drafting and disseminating new guidelines on healthcare professionals communication with patients, and effective use of volunteers by cancer leagues;
- collecting best practice on the implementation of the CanCon guide at the national level.

This proposal has relevance to the annual work programme through its focus on health determinants and health promotion, boosting cancer control, and equitable access to healthcare.
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The overall aim of SHE is to improve the health of children and young people in Europe, including reducing health inequalities, through a setting focus on schools. SHE supports its members to further develop and sustain school health promotion in each EU Member State by providing a European platform for school health promotion. SHE contributes to national and regional development and implementation of school health promotion, as well as the development of new knowledge and evidence.
For the period 2018-2021 three specific objectives are formulated based on the mission and purpose of SHE: 1) By the end of 2021 the functioning of national and regional health promoting school networks and the implementation of health promoting schools has been supported by sharing good practices, expertise and skills and reinforcing the position of SHE national and regional coordinators; 2) By the end of 2021 the professional competence development of the SHE members and other stakeholders has been supported by the delivery of the SHE support programme; 3) By the end of 2021 the visibility and access to evidence based information on school health promotion has increased by the delivery of SHE publications and presentations.
Methods to achieve these objectives are: ameetings with SHE members and other stakeholders; capacity building workshops; SHE website; SHE helpdesk; share information through newsletters and social media and encourage regional and cross-border cooperation. Also, support school twinning; develop and implement teacher training material on school health inequality, renew the SHE online school manual; organising the SHE academy, support publications and do consultancy visits. Furthermore, develop and publish SHE promoting material; factsheets; online glossary; representing SHE at international conferences; developing European standards and indicators for health promoting schools and monitor the implementation on school health promotion in Europe.


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In 2019 EHN will focus on creating awareness of the human and economic burden of CVD among newly-elected MEPs and new EU Commissioners and their cabinets (new EU mandate). We will do so by intensifying interaction and communications with the new EU mandate and organising a meeting at the end of the year, to present our proposal for a plan for action on CVD in Europe.

We do not expect any major new policy developments in 2019, due to the upcoming elections to the European Parliament and the change of EU Commissioners, so we will grasp the opportunity to review our papers on e-cigarettes, CVD risk assessment programmes and physical activity. We will update them with the most recent evidence and disseminate them widely to selected target audiences. We will continue to work on policies that are going through the legislative process, debated in European Fora, or likely to be taken up at EU member state level. Policy areas include agriculture; trade; food information (front-of-pack labelling) and composition (trans fatty acids); and marketing of HFSS food to children.

A key role, as a member organisation, is to support our members by providing information, enhancing their capacities, and facilitating knowledge-exchange. Our role is also to enable them, and their constituencies, to participate in and influence debates on health policy, policies that impact on cardiovascular health, and health regulations. To that end we will organise five meetings for our members and commission research, including on e-/mHealth and how it benefits cardiovascular patients. 2019 will also see the EHN Research Platform swing into action.

In conclusion, we believe that our 2019 operational objectives and the activities we have selected to achieve them, will contribute to achieve the general and specific objectives of our FPA. We believe that putting cardiovascular health on the agenda of new MEPs/Commissioners will benefit EU citizens as well as the EU economy.

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The overarching goal of the SFP Coalition multiannual work programme between 2018 and 2021 is to prevent cancer and chronic diseases through smoking prevention at EU and national level with a special focus on young people and health in all policies. The work plan for 2019 will support this goal by continuing advocacy campaigns on tobacco control research and tobacco taxation; by building on the results of the global meetings on the FCTC and Illicit Trade Protocol and the UN NCD process, by continuing to engage its Coalition members at EU level, and by supporting national campaigns and capacity building for effective civil dialogue and tobacco control advocacy. In 2019 SFP will also focus on awareness raising on the FCTC, the Illicit Trade Protocol, SDG 3 and targets 3.4 and 3.A in the context of the European elections.
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EPHA’s proposal for a Specific Grant Agreement (SGA) 2019 has been designed to be as coherent as possible with EPHA’s 2018-2021 Framework Partnership Agreement (FPA). It provides a problem analysis for the activities proposed, taking into account current developments and evidence that are influencing public health.

The proposal defines the 2019 operational SMART objectives in each priority area and how they relate to the multiannual objectives outlined in the FPA. Each 2019 objective is broken down into concrete activities, milestones and deliverables.

In line with the FPA, EPHA is seeking funding to continue working in eight thematic priority areas: prevention of chronic NCDs, access to affordable medicines, antimicrobial resistance, digital health, healthy trade policy, improving access to healthcare for disadvantaged groups, financing for public health, and capacity building. One of the main differences between the 2019 SGA proposal and previous years is that more emphasis will be placed on establishing synergies between these areas. This will enable EPHA to be more results-oriented by fostering cross-fertilisation of ideas and action, strengthening the evidence base and working effectively as a network through our diverse membership. A strong focus is placed on ensuring transfer of knowledge between the EU and national level to support the priorities of the 3rd Health Programme and the European Commission, and to emphasise the added value of EU health policymaking.

Moreover, the proposal describes the planning and implementation of EPHA’s Work Programme, including the resources required to accomplish it (staff and budget), the target audience(s) for each activity and how deliverables will be disseminated. It also shows how the work will be evaluated, with indicators provided for each objective. The final part explains how EPHA’s operational and financial management structure supports the successful delivery, with a detailed budget accompanying the proposal.

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To provide all patients with matching hematopoietic stem cell products international collaboration is essential. WMDA strives that userfriendly tools are available to find the best stem cell source without unnecessary administrative burden. This can be achieved by centralised collection of information, modern ICT environment, centralised approach for adverse events reporting and transparent regulatory requirements.
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The European Public Health Association (EUPHA) is a major player in the European public health area. Since our establishment in 1992, EUPHA has been growing and has an increasing influence on the public health dialogue in Europe.

EUPHA will continue her activities in 2019, fully in line with the 3rd Health Programme of the European Commission. In order to be a leading actor in the public health arena in Europe, we will be introducing a number of new initiatives made possible through the additional funding of the 2019 operating grant. EUPHA identifies the following operational targets for 2019:
1. Strengthening national public health associations;
2. Advocating for public health on the European agenda;
3. Representing the European voice at global level and supporting public health at global level;
4. Providing actively and accurately the evidence to make informed practice and policy decisions in the field of public health;
5. Nurturing the expertise and knowledge on specific public health topics;
6. Preparing the future generation of public health professionals for their leadership role in public health.

EUPHA’s strong organisation, with 25 years of experience, is a solid basis to contribute to the objectives of the Third Health Programme and to play a key role in the European public health area.
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In 2019, AIDS Action Europe (AAE) will continue the work that is described under its leading title of the FPA 2018 - 2021, Stronger Together, and that is based on the achievements of the activities in 2018. imwill implement its work programme in 2018. As a comprehensive NGO network of 421 NGOs, national networks, AIDS service organisations, and community based groups in 47 countries in the WHO European Region, AAE is a unique player with substantial added value for European policy making and programme implementation in the response to HIV/AIDS, TB and hepatitis.
The three main objectives of the work are
1. AAE contributes effectively to the HIV, TB and hepatitis response in Europe
2. AAE provides platforms to communicate and facilitate collaboration, networking, and linking and learning
3. Continuous improvement of network collaboration through governance and internal management.
Considering the epidemiological background and evidence, AAE will continue with regard to Objective I, to serve as the secretariat to the EU CSF, to monitor and contribute to policy developments, to coordinate the European HIV Legal Forum, and advocate for CS concerns. Objective 2 comprises improved bilingual communication and exchange, intensified social media communication, dissemination of 3rd health programme information and tools, support of national and regional affordability advocacy efforts and provision of capacity building activities. Eventually, objective III includes ensuring topic-related sub-network cooperation, overall governance by the AAE Steering Committee and implementation, monitoring, evaluation, follow-up and fundraising for the work programme. Herewith we will continue focusing on the following six core thematic areas identified by our members and partners:
- CBVCT
- Affordability
- Tackling legal barriers in the response to HIV, TB and hepatitis
- Criminalisation of HIV non-disclosure, exposure and transmission
- SRHR
- Tackling stigma and discrimination

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Health Action International’s (HAI) 2019 European workplan builds on previous successes supported by CHAFEA. It provides a response to persistent shortcomings in European medicines policy and regulation. HAI’s workplan is aligned with the objectives of the Third Health Programme and with HAI’s organisational goals: (1) Access to Affordable Medicines, (2) Medicines Safety, Added Therapeutic Value and Responsible Use, (3) Democratisation of Medicines Policy. In 2019, HAI will continue to address factors affecting access to medicines, including Intellectual Property Rights (IPR) while campaigning to broaden public and policy support in the European Union for alternative models of biomedical innovation that prioritise unmet medical needs, contribute to medicines affordability and ensure public return on public investment. Through the ‘Our Medicines, Our Right’ Campaign, we will seek to broaden policy support to medicines price transparency and R&D costs, as well as needs driven R&D modelling. We will roll-out campaign activities in Germany and thereby build bridges between policy discussions at the EU and Member State level. HAI will, furthermore, implement initiatives to promote responsible use of medicines, including antibiotics, by healthcare professionals. As a member of the Health Technology Assessment (HTA) Network Stakeholders Pool, HAI will contribute to the work programme of the network and advocate for strengthened EU collaboration on HTA. We will advocate specifically for joint HTA to be driven by high evaluation standards, transparency and independence from commercial interests. HAI will also seek policy and regulatory support for a more robust EU framework for medicines market authorization, in particular for cancer medicines. As a member of the European Medicines Agency (EMA) Patients’ and Consumers’ Working Party (PCWP), HAI will bring an independent consumers’ voice to EMA’s discussions and public consultations.
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Tobacco consumption is the major single cause for premature deaths in the European Union (EU). Special Eurobarometer 458/2017 indicates that over a quarter (26%) of European citizens are currently smoking, and an increase in consumption amongst young people aged 15-24 is observed since 2014 (from 24% to 29%). Smoking within the EU is estimated to cause 700.000 deaths annually, half of which are among 35–69-year-olds. As smoking is responsible for half the difference in deaths across socio-economic groups, tobacco control has a major role to play in reducing health and social inequalities.

ENSP plays a major role in the EU to prevent the tobacco industry from biasing and slowing down the tobacco control community effort. Key objectives for 2019:

O.1 - To assist and support the European Institutions with the complete implementation of tobacco control legislation, through the effective transposition and enforcement of the TPD (2014/40/EU) and the implementation of the WHO FCTC - through the provision of solid scientific evidence and awareness raising at the EU level.

O. 2 - To strengthen advocacy capacity at EU MS National level, and more particularly to empower Civil Society organisations, policy makers, academics, experts and all other relevant stakeholders through the provision of science-based evidence, increased health literacy, promotion of healthy lifestyle decisions, disease prevention and improving access to tobacco dependence treatment, through a wide range of channels and innovative tools.

O. 3 - To reduce health inequalities due to tobacco use at the micro level, through focusing on the 3rd Health Programme thematic priority areas and tobacco use, and through the engagement of youth in tobacco control activities.

O.4 - To enhance the sustainability of the actions performed through the Operating Grant so as to ensure the strategic long-term development and return on EU investment in the post Operating Grant period.


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The Correlation Network (CN) is a European civil society network and centre of expertise in the field of drug use, harm reduction and social inclusion.

Overall objective of this proposal:
Improve the access to and the quality of harm reduction services for People Who Use Drugs (PWUD), including other related vulnerable and marginalised people and to enhance policies and practices that increase social inclusion.

This is achieved by the following strategic objectives
- Strengthen the network and the collaboration with its members and partners through an adequate and solid organisational network structure
- Monitor developments and collect information and evidence in the field of drug use and harm reduction, by involving the expertise of civil society organisations
- Strengthen capacities of the various players in the field of drug use and harm reduction and facilitate exchange between network members and partners
- Advocate for full coverage of harm reduction programmes in Europe, addressing both health and social aspects.

All CN activities will pay specific attention to Hepatitis C, new drug trends and overdose prevention. Relevant CN outputs include : Sustainable network, Annual Monitoring Reports, Online knowledge and training hub, European Harm Reduction Conferences (2018/20), policy recommendations.

CN contributes to the Third Health Programme (THP) by promoting health (in particular harm reduction), prevent diseases (in particular drug-related diseases and infectious diseases such as HCV and HIV/AIDS), and foster supportive environments for healthy lifestyles (e.g. by reducing barriers to access health and social services).

CN contributes as well to the following THP priorities:
1.2. Drugs-related health damage, including information and prevention
1.3. HIV/AIDS, tuberculosis and hepatitis
2.2. Capacity-building against health threats in Member States, including, where appropriate, cooperation with neighbouring countries

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This is the second year of a proposed 4-year Framework Partnership Agreement (FPA). It builds on the actions under a previous Framework Partnership Agreement, OBTAINS-E, supported by the 3rd Health Programme. OBTAINS-E is the acronym for OBesity Training And Information Services in Europe.

The OBTAINS-E2 programme contributes to the EU 3rd Health Programme and its priorities for preventing disease and supporting healthy lifestyles, reducing health inequalities, promoting cross-border medical expertise (including rare causes of obesity), and supporting evidence-based and cost-effective prevention and health promotion activities. OBTAINS-E2 will support access to best-practice weight management services for all citizens, along with high quality information available to all, with a special focus on inequalities and the development of policies to tackle obesity across the region.

In 2019, OBTAINS-E2 will focus on:

(i) the dissemination of good health care practices for obesity treatment and weight management through our SCOPE online training and professional development;

(ii) the maintenance and enhancement of European mapping and information services; and

(iii) the expansion of our support services for advocacy and policy dissemination, including the building of a Policy Repository as part of a new European Obesity Observatory.

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TB Europe Coalition (TBEC) is the only regional civil society network working exclusively on TB in the WHO Europe region and, with 180 members in 35 WHO Europe countries, is uniquely positioned to increase the political will needed to end the TB epidemic across the region by strengthening the coordinated response of civil society.

Despite being preventable and curable, tuberculosis (TB) is the biggest infectious disease killer. Global leaders have committed to end the epidemic by 2030 but, at current rates of progress, this will not be achieved for another 100 years at least. 2018 was a turning point in the fight against TB; the UN High-Level Meeting on TB spurred unprecedented political attention for TB. It is essential that civil society work collectively in 2019 to ensure that this momentum is not lost. TBEC members will play a significant role in holding national governments, and the region collectively, to account.

TBEC has identified health system financing, people-centred TB policy, and TB R&D as the key thematic priorities in the region for the next three years.

TBEC has identified four key objectives for 2019 work plan: 1) well-structured TBEC governance and accountability mechanisms; 2) robust processes for communication and external outreach, including first ever comprehensive media strategy and new TBEC website; 3) strong partnerships with key decision makers, influencers and civil society in interdependent policy areas, in particular TBEC priority thematic areas; and 4) knowledge exchange visit from the high-burden TB EU countries, online webinars and publications.

TBEC’s objectives are directly relevant to the four 3rd Health Programme Objectives and DG SANTE and will further increase the EU’s existing public health knowledge on TB, advance coordinated efforts to combat DR-TB and TB/HIV co-infection, and subsequently, reduce the financial burden of TB on health systems and, positively impact the health of citizens in the European region.

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In 2019, AE will:
• Ensure that the voices of people with dementia are duly included in all operating grant activities by involving its European Working Group of People with Dementia, organise at least three meetings of the group and collaborate closely with the 2nd Joint Action on Dementia and develop recommendations on dementia-friendly and dementia-inclusive initiatives
• Collect information on epidemiological studies carried out in European countries looking at the incidence and prevalence of MCI, AD and dementia, carry out a meta-analysis, calculate the estimated numbers of people with dementia in all Member States of the European Union c and publish a report of these findings in the 2019 edition of the Alzheimer Europe Yearbook.
• Identify the issues faced by people with dementia when participating in research as the priority of its European Dementia Ethics Network and carry out an extensive literature review on this subject, develop recommendations to promote a human rights based approach to the involvement of people with dementia in research and publish the recommendations with the findings of the literature review in a report.
• Continue with the development of its European Dementia Observatory, organise a conference in The Hague, Netherlands under the motto “Making valuable connections” from 22-25 October 2019 with the participation of at least 750 participants from 30 European countries and carry out an invetory of European and national treatment and management guidelines for dementia.
• Carry out a mapping exercise of its national organisations to understand their membership, staffing, funding as well as their activities and services and bring together representatives of the national Alzheimer associations for three networking meetings of the Alzheimer’s Association Academy.
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The project builds upon the preliminary achievements of the B3 Action Group on Integrated Care of the European Innovation Partnership on Active and Healthy Ageing (EIP on AHA) that first developed the concept of the B3 Maturity Model. Through the activities of the EU Health Programme funded project SCIROCCO, the Model has been further refined and is supported by a validated online self-assessment tool for integrated care. The ambition of the SCIROCCO Exchange project is to maximise the value and impact of the Model and Tool. The purpose of this hub is to facilitate the process of “matching” the needs of the regions with existing evidence on integrated care, good practices, tools and guidelines and thus facilitate the learning and exchange of good practices. The project will deliver improved coding of available evidence on integrated care and make the learning readily available to potential adopters. The project also explores the readiness of local environment for the adoption of integrated care, using the SCIROCCO online self-assessment tool, in order to understand the local needs and the ground for the transition. This will serve as a basis to design a tailored capacity-building approach and personalised assistance to national and regional health and social care authorities. The project will capture the learning from the process of transferability and knowledge transfer in order to inform improvement planning for integrated care. Finally, the project will also be an opportunity to explore the potential expansion of the SCIROCCO Maturity Model and its online self-assessment tool for integrated care to other relevant areas of active and healthy ageing.
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VIGOUR will effectively support care authorities in progressing the transformation of their health and care systems to provide sustainable models for integrated care which will facilitate identification of good practice and scaling-up. This will be achieved through the delivery of an evidence-based integrated care support programme designed to understand and guide 16 care authorities through a staged process of analysis, advice on good practice and training in care system capacity and capability building and implementation approaches at the operational, organisational and strategic levels of stakeholders involved in different localities throughout Europe. In practice, care authorities will be supported in focussing their care integration ambitions, in operationally preparing the implementation of good practice suitably aligned to any prevailing local circumstances, and finally in rolling out these practices to at least one percent of their overall target population in the framework of local scaling-up projects as an integral part of project plans. Knowledge exchange and mutual learning throughout this process will be enhanced by a twinning scheme bringing together VIGOUR “pioneer” care authorities with “followers”. Further care authorities will benefit from the experiences gained by the VIGOUR participants throughout the staged scaling-up process in terms of dedicated webinar and podcast programmes.
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The objective of this project is to support Member States in improving gathering information on rare diseases by implementation of Orphacodes (rare diseases specific codification system). The implementation process will be guided by the "Standard procedure and guide for the coding with Orphacodes" and the "Specification and implementation manual of the Master file" both developed in the frame of the current RD-ACTION Joint Action. The aim of the Orphacode project is to promote the use of the Orphanet nomenclature for implementation into routine coding systems. This enables a standardised and consistent level of information to be shared at European level. Starting with countries that have no systematic implementation of the Orpha codification yet, but that are actively committed already in doing so, this project will provide a sufficient real-world implementation experience to be captured by other countries in the future. Outcomes are: 1. Development of comprehensive rules of use and meta-data documentation for Orphacodes use in clinical health information and other applications that has been developed and rigorously tested in health care systems from EC countries of varying sizes, health information systems, and languages 2. An electronic repository will be created to house this information at the Orphanet website, linking to Orphadata, to include: guidance for use of Orphacodes; teaching and training documents used in health care systems; tools for export of Orphacodes to federated data exploitation at the EC level. 3. Through collaboration of RDCODE partners and invited collaboration with key stakeholders at workshops, effective implementation will be achieved at implementing countries as well as momentum will be developed in other jurisdictions to implement Orphacodes in widespread use to accurately measure the impact of rare diseases in the EC.
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Objectives: MoH intends to organize the Ministerial EU Conference on Antimicrobial Resistance titled “Next steps towards making the EU a best practice region in combatting AMR through a One Health approach”
- The Conference will be held between 28th February and 1st March 2019, in Bucharest, Romania
A. Activities:
1. Establish the management team and the Scientific Committee. 2. Establish Agenda with confirmed speakers and discussion leader
3. Preparing the procurement procedures for goods and services. 4. Launching and finalizing the procurement procedures and signing the contracts. 5. Meetings of Scientific Committee 6. Develop leaflet for Conference promotion and visibility. 7.Request for imput on background document to WHO and EU-JAMRAI 8. Prepare outcome document.
B. Type and number of persons benefiting from the project:
- 150 - 200 participants will be invited to attend the conference: 1-3 participants per Member States, also will be invited high level representatives from WHO, ECDC, EC, FAO, OIE, professionals association, associations of pharmaceutical producers, association of patients, public private partnerships.
C. Outcomes: • Update of the current state of implementation of the One Health AMR action plan in all member states
• Positioning the EU as a best practice region from the AMU/AMR policy perspective and exchange best practices about ways to improve infection prevention and prudent use of antimicrobials in humans and animals.
• Strong political commitment to implement and ensure effective actions regarding surveillance, monitoring, antimicrobial use and infection prevention at national and EU
• Strong political commitment to implement and ensure effective actions regarding illegal sales and inappropriate use of antibiotics.
• Improve exchange of information between MS about development and implementation of National Action Plans on AMR, AMU and infection prevention.
• Improve education of healthcare professionals regarding AMR, including appropriate diagnostic procedures, prudential use of antibiotics and infection control – in human and animal sector.
• Awareness of the need to reduce the consumption of antibiotics.

D. Output Indicator(s)


- AMR Background paper with updates of MS regarding the implementation of their national action plans plus best practices from Members States
- Outcome document - analysis of current situation, (including barriers and motivators of enforcement activities in member states); suggestions for improvement; and lines of commitment to further implement EU and national regulation regarding AMR & AMU
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Vaccination is a valuable investment in health with highly positive return for the sustained development of populations. It is a preventive tool involving much less cost than the cost of targeted diseases and their consequences. Vaccination is a truly complex cross sectoral issue, as pertaining to basic immunology discovery, benefit/safety evaluation and epidemiological surveillance, to public health policies and health system planning, to forecasting and financing, to health professionals’ education and health literacy, to cultural identities and social norms. By involving a wide variety of stakeholders, the EU-JAV project aims at building concrete tools to improve vaccination coverage in EU and therefore improve population health. EU-JAV will also capitalise on the numerous existing initiatives and projects, to challenge and strengthen the European cooperation of Member states on vaccination while contributing to sustainably integrate EU-JAV achievements in health policies of European countries. The JA Vaccination proposes to address several important issues, common to many countries such as establishing a sustained cooperation of relevant Member State authorities, defining basic principles for vaccine demand forecasting, developing a concept and prototype for a data warehouse for EU-wide sharing of vaccine supply and demand data among dedicated stakeholders, defining common stages and criteria for priority-setting of vaccine research and development, developing a concept and prototype for a vaccine R&D priority setting framework, defining structural, technical and legal specifications as regards data requirements for electronic vaccine registries/databases/immunisation information systems and providing a framework to cooperate on confidence from research to best practices and implementation. To achieve this ambitious concrete actions, the project gathers 20 partners from 20 different countries as well as international organisations and relevant stakeholders.
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Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. However, thalassaemia’s prioritisation on national health agendas and the development of national plans for its effective control in the EU has been hampered by the many challenges involved, mainly related to its rarity and migration.

THALassaemia In Action (THALIA) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities:

1. Continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. This is to be achieved via the development of e-learning tools and the launching of capacity building courses and training seminars.

2. Raise awareness on thalassaemia and the importance of optimal care amongst the public at large, as well as among THALIA target groups at national and European level. This will be attained using an array of online tools, activities and publications.

3. Prioritise haemoglobin disorders and their control (prevention and management) at European level. This will be accomplished by establishing and training national patients’ associations in EU priority countries, creating an EU Electronic Health Record and entering into policy dialogue with policymakers at national and European level.

4. Support research programmes and studies focused on the clinical management of Thalassaemia. This is to be achieved via the publication of guidelines on the clinical management of Thalassaemia, participating in scientific conferences and providing medical specialists in priority countries with fellowships.

Knowledge is our power.
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Rare diseases (RD) have been considered a challenge for Europe, for they have been identified as one of the paradigmatic fields in which actions conducted at the European level constitute the adequate response to their specific problems: poor recognition leading to diagnostic delay and inappropriate management including adapted social services, poor health outcomes, social burden, limited knowledge on natural history and pathophysiology leading to an insufficient development of new therapies. Amongst the key actions the European Commission (EC) has contributed to develop so far in order to address key priorities in the field of RD there is Orphanet, a European Knowledge base dedicated to RD and orphan drugs, accessible from the portal www.orpha.net, and providing re-usable data through the platform www.orphadata.org. Orphanet has also be recognised, by the EC , as having a de facto monopoly in its field. The objectives of the project are:
1. To provide the RD community with interoperability tools, in particular around an inventory of RD, to allow for semantic interoperability between countries and between domains (health, research)
2. To provide high-quality information on RD, in particular through an encyclopedia in several languages,
3. To provide a directory of expert services in order to help patients, physicians and stakeholders finding the expertise on a particular disease in Europe and beyond, and to produce data needed to support policy actions.
4. To further develop and sustain Orphanet as the reference knowledge base on RD, by establishing and consolidating collaboration within the Orphanet pan-European network and with European Reference Networks (ERNs) for the production, improvement and dissemination of knowledge on rare diseases. It will allow for the creation of a consistent expertise ecosystem for rare diseases in Europe.
The overall outcome is the consolidation of Orphanet as the reference source of information on RD for European citizens.

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The ERN for rare and complex urogenital diseases and conditions ERN eUROGEN will deliver quicker specialist evaluation and more equitable access to high quality diagnosis, treatment and care for patients with rare urogenital diseases and complex conditions who need highly specialised assessment and surgery. We will train the next generation of surgeons to increase skill levels and improve outcomes. A priority will be transferring knowledge and training to the Member States with less expertise, thereby increasing the quality of surgical outcomes across Europe. Educational and research strategies will be developed together with patients and patient representatives involved in the relevant disease areas.

ERN eUROGEN comprises 3 workstreams (WS). Focusing on clinical and surgical excellence, we will ensure continuity of care from childhood throughout the lifespan of the patient encompassing the important and often neglected adolescent period of urogenital practice:
WS1 - rare congenital uro-recto-genital anomalies
WS2 - functional urogenital conditions requiring highly specialised surgery
WS3 - rare urogenital tumours

ERN eUROGEN will create faster and more equitable access to high quality diagnosis and treatment advice, guideline development and sharing of best practice care for patients with rare urogenital diseases and complex conditions who need highly specialised surgery. We have 3 broad workstreams to ensure that as many of our patients as possible can receive high quality specialist care from birth through to the end of life. Patients have reported a lack of adequate care when transitioning from paediatric to adult urogenital care. Processes will be put into place to transfer the care of these patients from paediatric to adult specialists and European virtual Multi-disciplinary Teams including the healthcare providers with expertise in the area will be used for case discussions and recommendations for treatment and ongoing care.
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The effects of health inequalities within and between EU MS are widely recognized,and reducing health inequalities is on the agenda of many MS. Moreover new challenges like the huge migration flows and the economic crisis and austerity policies that affect EU citizen’s everyday life are worsening the scenario. Despite an increasing concern and awareness on health inequalities, a wide gap exists in Europe in terms of political response.
The Joint Action Health Equity Europe will represent an important opportunity for MS to work jointly to address health inequalities and underlying social determinants of health.
The general objective of the project is to improve health and well-being of the EU citizens and achieve greater equity in health outcomes across all groups in society by a focus on socio-economic determinants of health and lifestyle related health inequalities. A particular priority will be given to migrants, since poor health and lack of access to health services can be an obstacle to integration.
This Joint Action aims to: deliver a policy framework with a menu of actions and recommendations for national, regional and local uptake and implementation; develop better policies improve monitoring, governance, implementation and evaluation; implement good practices and facilitate exchange and learning; identify factors of success, barriers and challenges and how to overcome them.
The Joint Action will contribute meeting two objectives of the Third health Program by introducing the equity lens in “Objective1: Promoting health, preventing diseases and fostering supportive environments for healthy lifestyles taking into account the ‘health in all policies” and in “Objective4: Facilitating access to better and safer healthcare for Union citizens”.
This Joint Action will follow a three-step approach that will facilitate: identification of policy options to tackle health inequalities; implementation of feasible and effective actions in all MS involved; elaboration and dissemination of further recommendations and guidelines.
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Ageing population and increased prevalence of chronic conditions combined with limited human and financial resources are putting health systems under increasing strain. Digital tools, however, bring an opportunity to improve health care sector. Integrating eHealth into health policy and aligning eHealth investments with health requirements is of high importance, especially when recommendations and practices can be transferred across countries. Targeting Members Sates and Countries of the EU and eHealth stakeholders, as well as the general public, this project aims to improve health care with the use of ICT. eHAction is the Joint Action supporting the eHealth Network, which, in its Multiannual Work Programme 2018-2021, sets targets for exploring eHealth to facilitate the management of chronic diseases and multi-morbidity, by increasing sustainability and efficiency of health systems, and by facilitating personalized care and empowering the citizen. Specifically, it will work to find ways to empower people by giving them an active role in managing their health care data and processes, to use health data in an innovative way and to enhance continuity of care through the use of interoperable and cross-border solutions. The eHAction is in line with the Third Programme of EU actions in the field of health contributing to foster health in Europe by promoting the use of eHealth in a structured policy framework.
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