Rare Diseases International Annual Membership Meeting
Charlotte2022-06-29T13:22:54+02:00Rare Diseases International Annual Membership Meeting
Fabry community leadership in an evolving landscape
Charlotte2022-06-28T13:51:34+02:00Fabry community leadership in an evolving landscape
Focus on Fabry Leaders around the world
Charlotte2022-06-30T11:04:04+02:00Interview 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
Charlotte2022-06-28T13:57:00+02:00International Fabry Congress MPS Lysosomales Association Spain
Focus on Fabry Leaders around the world
Charlotte2022-04-04T11:16:26+02:00Interview 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!
Charlotte2022-03-31T13:31:22+02:00Help us to train Face2Gene to diagnose Fabry patients earlier!
Rare Disease Day 2022
Charlotte2022-03-16T15:45:13+01:00On 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!
News from Sangamo Therapeutics
Charlotte2022-02-08T16:29:44+01:00Sangamo Therapeutics Announces Updated Preliminary Phase 1/2 Data Showing Tolerability and Sustained Elevated α-Gal A Enzyme Activity in Patients With Fabry Disease