Newsletter

Focus on Fabry Leaders around the world

2022-12-13T15:20:06+01:00

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 [...]

Focus on Fabry Leaders around the world2022-12-13T15:20:06+01:00

STAAR Phase I/II clinical study: recruiting participants

2022-12-13T14:16:26+01:00

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 [...]

STAAR Phase I/II clinical study: recruiting participants2022-12-13T14:16:26+01:00

Focus on Fabry Leaders around the world

2022-09-28T16:51:29+02:00

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 [...]

Focus on Fabry Leaders around the world2022-09-28T16:51:29+02:00

Focus on Fabry Leaders around the world

2022-06-30T11:04:04+02:00

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 [...]

Focus on Fabry Leaders around the world2022-06-30T11:04:04+02:00

Focus on Fabry Leaders around the world

2022-04-04T11:16:26+02:00

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 [...]

Focus on Fabry Leaders around the world2022-04-04T11:16:26+02:00

Focus on Fabry Leaders around the world

2021-12-20T14:03:51+01:00

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 [...]

Focus on Fabry Leaders around the world2021-12-20T14:03:51+01:00
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