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!
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...