Rare Disease Day events in Brussels

EURORDIS ’Reframe Rare’ Policy Event

On February 18th at the European Parliament EURORDIS – European Rare Diseases Organisation was relaunching the Network of Parliamentary Advocates for Rare Diseases, made up members of parliament (MEPs) advocating to improve the lives of the 30 million people with rare diseases in Europe.

The EURORDIS ’Reframe Rare’ Policy Event was held to mark the occasion of Rare Disease Day, the global campaign with events in 100+ countries around the world.

Participants heard from event co-hosts MEPs Tanja Fajon, Stelios Kympouropoulos and Frédérique Ries, as well as MEPs Kateřina Konečná and Tomislav Sokol, who hosted conversations with patient representatives from across Europe including Rebecca T. Skarberg from OIFE, on topics including research and innovation, access to medicines, holistic care and cross-border health are and access to specialized care. OIFE Vice President Dace Liepina was also present as one of the participants.

Black Pearl Awards Ceremony

Later in the evening Rebecca T. Skarberg, Knut Erik T. Skarberg and Dace Liepina attended the Black Pearl Awards as invited guests by EURORDIS. Read more about this year’s awardees and see a recording of the event here.