Interview with Alejandra Tornero from Alianza Lisosomal Argentina When did you join your national patient association? I am the founder of Alianza Lisosomal Argentina – ALA – and I lead the Alliance for Patients with Fabry, Gaucher and Pompe diseases. What was the reason for joining? The reason I joined is [...]
On Rare Disease Day, the community joined together across borders and across diseases to show that; Rare is many. Rare is strong. Rare is proud! Here are some of the amazing activities our members organised!
Interview with Yifan Xu from Fabry China When did you join your national patient association? I joined Fabry China in 2016. At that time the community was only founded since a few months. There were only 10 members. You could hardly say it was an organization, actually more like just a [...]
Registration now open We are very pleased to invite you to our first online FIN Expert Meeting on April 24th, 2021!