Exciting news!

In October 2024, ASA became an official member of EURORDIS-Rare Diseases Europe, the European federation of rare disease patient organisations. EURORDIS has been the voice of rare disease patients, empowering, advocating for and engaging patients for over 25 years, helping to raise the patient perspective in Europe.

This membership can help YOU as an ASA member to learn more about advocating for Angelman syndrome at the local, national and international level. You’ll find fact sheets on different policy topics as well as an extensive online training tool, EURORDIS Open Academy, free of charge!

EURORDIS Open Academy : The EURORDIS Open Academy accompanies patient advocates by offering rare disease-specific comprehensive training programmes that empower advocates with the knowledge, skills and confidence they need to engage with different stakeholders as equal partners.

Recommended module: Training : Scientific innovation and translational research

Don’t hesitate to check out the wide selection of open-source online training. Some of the modules have already proven to be very helpful to prepare our CAB (Community Advisory Board) members in their role. For example, if you would like to better understand fundamental and translational research via a very extensive online training tool, EURORDIS Open Academy.

ASA is also a member of the Council of European Federations, hosted by EURORDIS. This group meets once a year, in Paris or Brussels, discussing topical subjects in European policy. Attendees benefit from meeting with other similar international organisations for a single rare disease, learning from each other about topics such as funding research. We hope to learn more about European initiatives and funding for rare disease research via these meetings.

Another important initiative empowering patients and patient representatives in Europe are the European Reference Networks. EURORDIS trains and coordinates the patient advocates active in the European Reference Networks, the European Patient Advocacy Groups (ePags).

For more information: Connie, ASA Board Member from our Germany member organization is the main contact for our EURORDIS Membership.