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.