EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION [ EURORDIS ]

96 rue Didot 75014 Paris - France

Involved in the following projects during the 3rd programme

3rd Health Programme (2014-2020)
Proposal for Operating Grant Framework Partnership Agreement 2015-2017 for the European Organisation for Rare Diseases (EURORDIS) [EURORDIS FY2015-2017]
The European Organisation for Rare Diseases – EURORDIS – represents the voice of an estimated 30 million people living with a rare disease in the EU, and their families. The proposal submitted for...
The European Organisation for Rare Diseases – EURORDIS – represents the voice of an estimated 30 million people living with a rare disease in the EU, and their families. The proposal submitted for Operating Grant FPA 2015-2017 is structured around four main objectives of utmost importance for the European rare disease patients’ community:1. To consolidate the Rare Disease patients’ community and strengthen the RDs patients’ voice;2. To actively engage rare disease patients’ representatives into the effective implementation and monitoring of relevant EU legislation / strategies and support their integration at national level;3. To build capacities and empower rare disease patients advocates, members and volunteers;4. To sustain human, financial and organisational resources. EURORDIS achieves these objectives through the following activities: collecting data as well as gathering, disseminating and sharing information; support capacity-building to empower patients’ advocates; providing patients, families, carers, decision-makers and other stakeholders with relevant expertise to inform policy-making; generating EU added-value and support Member States efforts; promoting translational research towards therapeutic intervention for patients; serving as a relay of two-ways information flow between policy makers and rare disease patient groups; promoting access to high quality and safe healthcare services for rare disease patients throughout the EU. Through these activities, EURORDIS will contribute to the implementation of the priorities of the Third Public Health Programme which are to complement, add value and support national policies and strategies implemented by Member States to improve health, reduce health inequalities, support health capacity-building, generate and disseminate health information, contribute to innovative, efficient and sustainable health systems, support cross border healthcare in order to facilitate access to better and safer healthcare.
Start date: 01/01/2015 - End date: 31/12/2015

Call: Specific Grant Agreements for 2015 under the Framework Partnership Agreement for Operating Grants 2015-2017
Topic: Financial contribution to the functioning of non-governmental body (Specific Grant Agreement 2015)
3rd Health Programme (2014-2020)
EURORDIS SGA 2016 [EURORDIS SGA 2016]
The EURORDIS Specific Grant Agreement 2016 continues the work of SGA 2015 within the overarching Framework Partnership Agreement 2015-2017. EURORDIS main strategic objectives are to consolidate the Ra...
The EURORDIS Specific Grant Agreement 2016 continues the work of SGA 2015 within the overarching Framework Partnership Agreement 2015-2017. EURORDIS main strategic objectives are to consolidate the Rare Disease patient’s community and strengthen the rare disease patients’ voice; to actively engage rare disease patient representatives to contribute to the adoption, effective implementation and monitoring of relevant EU legislation/strategies and support their integration at national level; to build capacities and empower rare disease patients advocates, members and volunteers;to sustain human, financial and organisational resources. All activities within the SGA 2016 work to this effect.
Start date: 01/01/2016 - End date: 31/12/2016

Call: Health Programme Adhoc Call for invited (named) beneficiaries
Topic: Financial contributions to the functioning of non-governmental body (Operating grants)
3rd Health Programme (2014-2020)
EURORDIS RARE DISEASES EUROPE SGA 2017 [EURORDIS SGA 2017]
The European Organisation for Rare Diseases (EURORDIS) is the voice of 30 million people affected by rare diseases throughout Europe.

EURORDIS is a non-governmental patient-driven alliance of organis...
The European Organisation for Rare Diseases (EURORDIS) is the voice of 30 million people affected by rare diseases throughout Europe.

EURORDIS is a non-governmental patient-driven alliance of organisations and individuals active in the field of rare diseases in Europe.

EURORDIS represents 716 rare disease patient organisations in 63 countries out of which 27 EU member states, covering more than 4000 rare diseases and rare cancers.

EURORDIS advocates for people living with rare diseases, fosters patient engagement in Commission Expert Groups, at the European Medicines Agency and EUnetHTA, provides services to patients such as information, networking and capacity building on all aspects of their condition such as therapeutic developments, access to medicines, social services and healthcare. This is done through tools such as the eurordis.org website, Summer School, Rare Disease Day, RareConnect.org , the survey programme Rare Barometer Voices, Rare Diseases International and the European Conference on Rare Diseases & Orphan Products.

The EURORDIS Specific Grant Agreement 2017 continues the work of SGA 2016 within the overarching Framework Partnership Agreement 2015-2017. This grant's main strategic objectives are to consolidate the rare disease patient community and strengthen the voice of rare disease patients; to actively engage rare disease patient representatives to contribute to the adoption, effective implementation and monitoring of relevant EU legislation/strategies and support their integration at national level; to build capacities and empower rare disease patients advocates, members and volunteers; to sustain human, financial and organisational resources.

Start date: 01/01/2017 - End date: 31/12/2017

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements under HP-FPA-2014
3rd Health Programme (2014-2020)
EURORDIS RARE DISEASES EUROPE SGA 2018 [EURORDIS SGA FY2018]
The EURORDIS Specific Grant Agreement 2018 is the first SGA within the overarching Framework Partnership Agreement 2018-2021. EURORDIS main strategic objectives are to consolidate the Rare Disease pat...
The EURORDIS Specific Grant Agreement 2018 is the first SGA within the overarching Framework Partnership Agreement 2018-2021. EURORDIS main strategic objectives are to consolidate the Rare Disease patient’s
community and strengthen the rare disease patients’ voice; to actively engage rare disease patient representatives into the effective implementation and monitoring of relevant legislation/strategies; to build capacities and empower rare disease patients advocates, members and volunteers; to sustain human, financial and organisational resources. All activities within the SGA 2018 work to this effect.
Start date: 01/01/2018 - End date: 31/12/2018

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements under HP-FPA-2017
3rd Health Programme (2014-2020)
EURORDIS RARE DISEASES EUROPE SGA 2019 [EURORDIS SGA FY2019]
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...
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.
Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
Codification for Rare Diseases [RDCODE]
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 implemen...
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.
Start date: 01/01/2019 - End date: 31/12/2021

Call: Call for Proposals for Projects 2018
Topic: Orphacodes Project
3rd Health Programme (2014-2020)
EURORDIS RARE DISEASES EUROPE SGA 2020 [EURORDIS SGA 2020]
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...
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.
Start date: 01/01/2020 - End date: 31/12/2020

Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
EURORDIS SGA2021 [SGA 2021]
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 f...
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
Start date: 01/01/2021 - End date: 31/12/2021

Call: Invitation to submit proposals for Specific Operating Grants (SGA) for the year 2021 under the Annual Work Programme 2020 of 3HP
Topic: Specific Operating Grants for the year 2021
3rd Health Programme (2014-2020)
Promoting Implementation of Recommendations on Policy, Information and Data for Rare Diseases [RD-ACTION]
Rare diseases (RD) 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...
Rare diseases (RD) 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. The low prevalence and the specificity of RD make that a global, multi-stakeholder approach, intended to gather specific expertise and to build shared strategies is necessary to address these issues.
The general objectives of RD-Action are to:
▪ Support the further development and sustainability of the Orphanet database, the biggest global repository of information on RD
▪ Contribute to solutions to ensure an appropriate codification of RD in health information systems
▪ Continue implementation of the priorities identified in Council Recommendation 2009/C151/02 and the Commission Communication (COM 2008 679) on RD, with a view to ensuring the sustainability of the recommended priority actions and to support the work of the Commission Expert Group on Rare Diseases (CEGRD).
This JA will expand and consolidate the achievements of the former JAs on RD supported by the European Commission: the Orphanet JA and the EUCERD JA. More precisely, this proposal has the ambition to help member states to implement the recommended measures adopted or to be adopted by the CEGRD and to produce the data necessary for countries to do so. Interactions between the production of data at the Orphanet database level and the implementation of policy priorities including codification will be strengthened during this JA.RD-Action large geographical coverage is key to success as it will promote the transfer of European recommendations into national policies and the collection of information and concerns from MS to the CEGRD, thus to the European Commission.

Start date: 01/06/2015 - End date: 31/07/2018

Call: Grants for actions co-financed with Member State authorities 2014 (Joint Actions)
Topic: Rare Disease Joint Action
3rd Health Programme (2014-2020)
Joint Action on Rare Cancers [JARC]
This Joint Action on Rare Cancers (JARC) will be aimed at:

1. prioritising rare cancers (RCs) in the agenda of the Europe (EU) and Member States;
2. developing innovative and shared solutions for ...
This Joint Action on Rare Cancers (JARC) will be aimed at:

1. prioritising rare cancers (RCs) in the agenda of the Europe (EU) and Member States;
2. developing innovative and shared solutions for European Reference Networks (ERNs) on RCs, in the areas of quality of care, innovation, education and state of the art definition on prevention, diagnosis and treatment.
The objectives of JARC will be achieved by creating a platform for competent national authorities as well as institutions, scientific and professional societies and patient organisations, to produce consensus-based recommendations, with a special view to the new ERNs, seen as a great opportunity for improvement of RC patient outcomes in the EU.
Following the results of the RARECARE project, all the 12 families of RCs will be considered. Consensus-based recommendations about RCs will be provided to improve: 1) epidemiological surveillance of RCs; 2) quality of healthcare, primarily through the new ERNs; 3) the availability of clinical practice guidelines on RCs; 4) innovation, also by optimizing clinical research regulations as well as practices and semantics regarding patient data and tissues; 5) medical and patient education; 6) health policy measures on RCs at the EU and national level; 7) patient empowerment (which will be pursued across all items dealt with by JARC). All EU stakeholders in the field of RCs and rare diseases will be involved.
JARC will carry forward the aims of the Third Health Programme by improving chances of EU RC patients to have access to appropriate healthcare, primarily through optimal shaping of ERNs. Thus, all this should result in reduced healthcare inequalities, increased innovation in health, increased sustainability of health systems, decreased health migration and reduction of gaps in rare cancers survival across EU countries.

Start date: 01/10/2016 - End date: 30/09/2019

Call: Health Programme Adhoc Call for invited (named) beneficiaries
Topic: Rare cancer