Newsletter

Interview with Julia Alton from the Canadian Fabry Association When did you join your national patient association? I was 18 years old when I joined the Canadian Fabry Association (CFA) as a youth representative. What was the reason for joining? At the time I recognized the need for reaching the Fabry [...]

Phase I/II clinical study exploring the potential of ST-920 investigational gene therapy to treat Fabry disease: recruiting participants now Fabry disease is caused by changes in a gene called GLA leading to the shortage of a protein called alpha-galactosidase A (α-Gal A). Isaralgagene civaparvovec, or ST-920, is an investigational gene therapy [...]

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 [...]

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 [...]

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 [...]

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 [...]