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Project abstract

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 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
Duration: 12 month(s)
Current status: Finalised
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 1 029 456,00