Interview with Jack Johnson from FSIG (Fabry Support & Information Group) USA When did you join your national patient association? Well, since I founded the Fabry Support & Information Group with help from my mother and wife, it was from day one in 1996. What was the reason for joining? Forming [...]
International Fabry Congress MPS Lysosomales Association Spain
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 [...]
Help us to train Face2Gene to diagnose Fabry patients earlier!
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!
Sangamo Therapeutics Announces Updated Preliminary Phase 1/2 Data Showing Tolerability and Sustained Elevated α-Gal A Enzyme Activity in Patients With Fabry Disease
Join us for the Fabry Highlights from the Worldsymposium Webinar with Dr Hopkin April 5th, 2023 at 6.30pm-7.30pm CET
Virtual Fabry Expert Meeting 2022 on May 7th
Addressing the Challenges of Persons Living with a Rare Disease
