Rare Diseases / Projects

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: Rare Diseases
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: Rare Diseases
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: Rare Diseases
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: Rare Diseases
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: Rare Diseases