EURORDIS RARE DISEASES EUROPE SGA 2017

ended

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.