Sad news from Fabry Korea
Charlotte2023-03-17T13:41:33+01:00It is with great sadness that we learned of the passing of BongKi Lim, Fabry Korea's chairman for the past 22 years.
Evaluating the direct and indirect costs of Fabry disease
Charlotte2023-03-17T12:53:50+01:00Evaluating the direct and indirect costs of Fabry disease
News from Sangamo
Charlotte2023-03-17T10:55:07+01:00Chiesi Global Rare Diseases and Protalix BioTherapeutics Receive Positive CHMP Opinion for Pegunigalsidase Alfa for Treatment of Fabry Disease.
News from Chiesi
Charlotte2023-03-17T10:18:35+01:00Chiesi Global Rare Diseases and Protalix BioTherapeutics Receive Positive CHMP Opinion for Pegunigalsidase Alfa for Treatment of Fabry Disease.
Webinar Fabry Highlights of the WorldSymposium 2023
Charlotte2023-04-07T16:01:09+02:00Join us for the Fabry Highlights from the Worldsymposium 2023 webinar with Dr Hopkin April 5th, 2023 at 6.30pm-7.30pm CET
Fabry Women’s Day is coming up!
Charlotte2023-03-17T10:58:03+01:00April 1st is International Fabry Women’s Day! Join us in celebrating this special day.
Focus on Fabry Leaders around the world
Charlotte2022-12-13T15:20:06+01:00Interview 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 [...]
STAAR Phase I/II clinical study: recruiting participants
Charlotte2022-12-13T14:16:26+01:00Phase 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 [...]
Focus on Fabry Leaders around the world
Charlotte2022-09-28T16:51:29+02:00Interview 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 [...]
Rare Diseases International Annual Membership Meeting
Charlotte2022-06-29T13:22:54+02:00Rare Diseases International Annual Membership Meeting