Last week, the European Huntington Association attended the European Conference on Rare Diseases and Orphan Products organized by EURORDIS in Brussels. This is the biggest conference focusing on rare diseases.
These were two intense days of learning and sharing, where more than 700 participants gathered to strengthen the voice of people impacted by rare diseases and discuss concrete measures to provide a better quality of life to all those living with a rare condition.
The EHA presented a poster about the positive results of the online psychological support service implemented in Spain.
The conference culminated with a ceremonial signing of a co-created Open Letter to the European Commission, which details the expectations of the rare disease community for the next EU leadership and proposes a European Action Plan for Rare Diseases.
The EHA was one of the first organizations to sign this Open Letter to the EU Institutions and Country Leaders and urges you to do the same, here.
