Interview with Manjit Singh from the Lysosomal Storage Disorders Support Society (LSDSS) India When did you join your national patient association? I started the patient organisation in 2006 which finally was formed formally and registered in 2010 by 10 like minded parents who all are the founding members. What was the [...]
Save the Date Fabry Expert Meeting 2023 - April 21-23, 2023
Rare Diseases International Annual Membership Meeting
Fabry community leadership in an evolving landscape
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 [...]
Freeline will be progressing to the second dose cohort in the MARVEL-1 study immediately with first patient dosing expected in mid-2022
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!
