Latest projects

3rd Health Programme (2014-2020)
facilitatinG the Authorisation of Preparation Process for blood and tissues and cells [GAPP]
GAPP Joint Action (facilitatinG the Authorisation of Preparation Process for blood and tissues and cells) is a 36 months JA aiming at facilitating the development of a common and optimal approach to a...
GAPP Joint Action (facilitatinG the Authorisation of Preparation Process for blood and tissues and cells) is a 36 months JA aiming at facilitating the development of a common and optimal approach to assess and authorise preparation processes in blood and tissues establishments (BEs and TEs). Particular attention will be devoted to innovative processes that might come up taking advantage of the work developed in previous EU funded projects/actions. This Joint Action will clearly contribute to the implementation of Union legislation in the fields of human tissues and cells, blood, providing tools and training to increase harmonisation of those MS activities that regulate the areas of blood transfusion, transplantation of tissues and cells and assisted reproduction, in strong abidance with art 4.5 of Annex I of Regulation 282/2014. These are fields of healthcare that involve a considerable amount of movement of donated substances of human origin between MS and also movement of citizens between MS for treatment, particularly in the field of assisted reproduction. The aim of the action is to prepare a “Good Practice Guidelines to authorisation and preparation process in blood, tissues and cells” and its three technical annexes respectively on i) authorisation changes in donation, procurement and collection, processing, preservation, storage and distribution (divided in three part blood, tissues and cells, and reproductive tissues and cells); ii) assessing the quality and safety of donor testing, microbial inactivation and sterilisation steps as part of PPA; iii) assessing clinical data as part of PPA. In addition to this it will be built a model and a tool to facilitate sharing of information among European Union Competent Authorities and a number of CA inspectors will be trained specifically to assess and authorise preparation processes of tissues, cells, reproductive cells and blood products.
Start date: 01/05/2018 - End date: 30/04/2021

Call: Joint Actions 2016
Topic: 4. Facilitate access to better and safer healthcare for Union citizens
3rd Health Programme (2014-2020)
RD REGISTRY DATA WAREHOUSE [REGISTRY WAREHOUSE]
Patient registries and databases are key instruments to support clinical research in the field of rare diseases, to improve patient care and aide healthcare planning. The effort needed to gather regis...
Patient registries and databases are key instruments to support clinical research in the field of rare diseases, to improve patient care and aide healthcare planning. The effort needed to gather registry data is enormous and yet worthwhile since they are the basis for the observation of the natural course of a disease, for planning and for doing feasibility checks of clinical trials. A widely unknown number of RD registries existed, still exist or are in the process of being set up. So far, data exchange is a problem, not foreseen in most registries and cross-border interoperability is not provided. The small number of patients affected by rare diseases make registries even more important than in the normal population or in common diseases as they enable cross-border gathering of data to achieve sufficient sample size for any purpose in clinical research and or public health issues.
Patient and care team members of ERN-LUNG have deducted that the excellent pre-existing registries within ERN-LUNG could give a strong basis for a NEW Registry Warehouse enabling full data exchange and cross-border interoperability. This Rare Disease (RD) REGISTRY DATA WAREHOUSE will be a combination of existing registries, new registries or new registry elements that are brought together with full interoperability. To develop this RD REGISTRY DATA WAREHOUSE we build upon our experience with registries established and coordinated by the applicants (starting with CF, PCD and non-CF BE), existing software solutions (Open Source registry framework OSSE) developed and/or used for RD registries by the applicants and leadership in defining minimum data sets and compliance to data quality standards such as EUCERD Recommendations on RD registries, a project led by the coordinator.
This RD REGISTRY DATA WAREHOUSE will not only improve data management and research in rare lung diseases, but will serve as a blueprint to connect patient registries and databases linked to other rare diseases.

Start date: 01/04/2018 - End date: 31/03/2021

Call: Rare diseases - support for New Registries
Topic: 4.2 Support Member States, patient organisations and stakeholders by coordinated action at Union level in order to effectively help patients affected by rare diseases. This includes...
Topic: 4.2 Support Member States, patient organisations and stakeholders by coordinated action at Union level in order to effectively help patients affected by rare diseases. This includes the creation of reference networks (in compliance with point 4.1), Union wide information databases and registries for rare diseases based on common criteria.
3rd Health Programme (2014-2020)
Application for an Operating Grant EUPHA [EUPHA]
The European Public Health Association (EUPHA) is a pertinent player in the European public health area. Since our establishment in 1992, EUPHA has been growing and has an increasing influence on the ...
The European Public Health Association (EUPHA) is a pertinent 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. If awarded the operating grant, EUPHA can continue, expand our activities to influence the European public health policy and contribute to the Third Health Programme. Our main activities can be strengthened with the operating grant. These include:
- Publishing the European Journal of Public Health, in order to strengthening the scientific and independent voice in the field of public health and health services.
- Co-organising an annual European Public Health conference, in order to offer a means for exchanging information and a platform for debate to researchers, policy makers, and practitioners in the field of public health and health services research as well as public health training and education in Europe.
- Advocating public health in Europe by producing a wide range of materials for national public health associations, public health professionals and other stakeholders in Europe, as well as having great visibility to influence public health policy and practice in Europe.
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.


Start date: 09/02/2018 - End date: 08/02/2022
Call: Operating grants 2018-2021
Topic: 3rd Health Programme (2014-2020)
3rd Health Programme (2014-2020)
Strengthening action on health promotion and health equity in the EU: EuroHealthNet’s proposal for 2018-2021 [EuroHealthNet]
EuroHealthNet is a leading Partnership bringing together organisations, agencies and statutory bodies to contribute to our common mission of improving health and tackling health inequalities between a...
EuroHealthNet is a leading Partnership bringing together organisations, agencies and statutory bodies to contribute to our common mission of improving health and tackling health inequalities between and within European States.
Health inequalities are unfair and have a huge economic and social costs. Support from the 3rd Health Programme will enable EuroHealthNet to contribute: (1) to reducing health inequalities in Europe, by encouraging countries to act, through consolidated action on the social determinants of health, with a particular focus on children and young people; (2) to reducing the burden of chronic diseases and improving mental health and well-being; (3) to contribute to more innovative, sustainable and equitable health system, by strengthening the role of promotion and disease prevention; and (4) to achieving a high quality and effective European Partnership for improving health equity and well-being.

EuroHealthNet will realise these objectives through cross-cutting work in our three Platforms and through our core services:
POLICY: we monitor, analyse and influence policy at EU and national level and across sectors. We provide guidance to the Partnership about EU policies and vice versa.
PRACTICE: we build capacity and share knowledge among members and associates so that they can learn from and inspire one another, reinforce resources, shape initiatives and implement more ‘state of the art’ approaches in the relevant areas.
RESEARCH: we build the evidence base for effective policies and practices and share the latest evidence with researchers, policy makers and practitioners.
Our core services, which involve our highly effective communication activities, the coordination of Thematic Working Groups (TWIGs), membership development, administration and evaluation, reinforce our work. Our 2018-21 work programme, which focuses on one strategic objective per year, directly contributes to 3/4ths of the objectives of the 3rd Health Programme.
Start date: 06/02/2018 - End date: 05/02/2022

Call: Operating grants 2018-2021
Topic: 3rd Health Programme (2014-2020)
3rd Health Programme (2014-2020)
Unified European Registry for Inherited Metabolic Disorders [U-IMD]
More than 700 inherited metabolic diseases (IMDs) have been identified so far. Each single IMD is a rare condition, but collectively IMDs are affecting at least one in 500 newborns. Clinical presentat...
More than 700 inherited metabolic diseases (IMDs) have been identified so far. Each single IMD is a rare condition, but collectively IMDs are affecting at least one in 500 newborns. Clinical presentation of IMDs is wide-ranging from involvement of single organ systems to multi-systemic disease, confronting patients with significant and often severe health problems resulting in high morbidity, reduced life expectancy, and low quality of life.
For a limited number of IMDs networking activities already exist on a European or international level. The E-IMD, E-HOD and iNTD family of IMD registries has a relevant impact on improving the health of patients with IMDs and facilitates post-authorisation safety studies (PASS) for orphan drugs. However existing registries still do exclude a significant portion of IMDs and do not fulfill all core recommendations made by the European Union Committee of Experts on Rare Diseases (EUCERD). The recent inception of the European Reference Network for Hereditary Metabolic Diseases (MetabERN) lays the foundation for the development of an overarching European IT platform for IMD registries.
The project consists of 3 components: (1) a novel registry platform for all known IMDs, (2) an upgrade of existing IMD registries and (3) a collaboration with the European Rare Kidney Disease Reference Network (ERKNet). The new Unified European Registry for Inherited Metabolic Diseases (U-IMD) will encompass all known IMDs, fully implementing EUCERD recommendations. Data modules developed for U-IMD will be integrated in the existing IMD registries, with the iNTD registry as pilot, thus reaching interoperability of patient records. MetabERN and ERKNet will develop a common standard for minimal core data sets.
The U-IMD registry will follow an open multiple stakeholder approach, explicitly seeking collaborations with national and EU level health authorities, other scientific networks and consortia, patient and parent organizations and industry.

Start date: 01/02/2018 - End date: 31/01/2021

Call: Rare diseases - support for New Registries
Topic: 4.2 Support Member States, patient organisations and stakeholders by coordinated action at Union level in order to effectively help patients affected by rare diseases. This includes...
Topic: 4.2 Support Member States, patient organisations and stakeholders by coordinated action at Union level in order to effectively help patients affected by rare diseases. This includes the creation of reference networks (in compliance with point 4.1), Union wide information databases and registries for rare diseases based on common criteria.