Campaign for European Year for Rare Diseases 2019

Campaign for European Year for Rare Diseases 2019

In 2019, we will celebrate the 20 year anniversary of the adoption of the EU Regulation on Orphan Medicinal Products and the 10 year anniversary of the Commission Communication and Council Recommendation on rare diseases. The European Year will send a strong public and political message on behalf of the 30 million Europeans who suffer from a rare disease and will raise awareness and encourage researchers to focus on these rare, mostly unknown, seriously debilitating and often life-threatening diseases. Join the campaign to make 2019 the European Year for Rare Diseases. Sign-up now!   23 October Webinar: European Year for Rare Diseases When: Join us on Thursday, 23 October at 15.00 (Central European Time) for an hour long interactive webinar. Why: Learn more about the principle objectives of the campaign for a European Year for Rare Diseases in 2019, its national and European value and how you can get involved. How: Connect to the European Year webinar room Enter as a guest, enter your first name and/or association name No password is required Test your connection before the webinar here Questions? eyrd2019@eurordis.org   The challenge of living with a rare disease   Most rare diseases are genetic, serious, chronic and debilitating. People with rare diseases face many challenges including access to diagnostics and treatments, financial burdens and isolation. Read and share stories of ordinary people living extraordinary lives... More information     EURORDIS Call for a European Year for Rare Diseases European Year for Rare Diseases 2019: Questions & Answers   Information Leaflet Template letter to your national policy makers Logo horizontal Logo vertical The history of European Years EU regulation on Orphan Medicinal Products Commission Communication and Council Recommendation on rare diseases Contact us