The Moving Forward project at the EURORDIS 2024

– Written by the Moving Forward team on 18th June 2024

The Moving Forward team attended the 12 TH European Conference on Rare Diseases and Orphan Products organized by EURORDIS in Brussels some weeks ago.

This is the biggest conference focusing on rare diseases and it’s a chance to showcase the work done by the several rare disease organizations in Europe, meet and connect to patient advocates, professionals, politicians, pharma
representatives and regulators, and get a sense of the main challenges and decisions related to Rare Diseases in Europe.


These were two intense days of learning and sharing, where more than 700 participants gathered (face-to-face and online) 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 Moving Forward team presented a poster about the positive results of the online psychological support service implemented in Spain. This work will also be part of the EURORDIS Mental & Wellbeing Tools & Approaches campaign.

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 European Huntington Association was one of the first organizations to sign this Open Letter to the EU Institutions and Country Leaders.

We left Brussels feeling that the Rare Disease Community is Better Together!