The fifth episode of the interview with Francesca Sofia about Rosaria´s experience with the creation of the Italian Registry and the European Registry for Alternating Hemiplegia.
The Register for a Rare Disease, as a valuable tool to support the research until the final development of an effective treatment, is by its very nature a long-term investment and requires considerable planning and management skills for the patients associations that want to have an active role in this process.
https://www.facebook.com/sciencecompass/videos/250321388708915/
