The first episode of Rosaria´s interview with Francesca Sofia about the creation of the Italian Registry for AHC, published by Science Compass
“Are you planning to create a Registry for a Rare Disease?
Do you want to understand what steps to take and what actions can guarantee the best result?
In this video the first part of the interview with Rosaria Vavassori. Past President of the Italian Association for AHC (A.I.S.EA); about 15 years ago she created a Registry that contributed to the identification of the gene responsible for her son’s disease. In this first video she tells us about her motivations and the push after the diagnosis.
PS
The interview is divided into 6 episodes
https://www.facebook.com/sciencecompass/videos/249040512170336/
