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[…] 2017) – Today the FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy ( FSHD), announced that with the FSHD Champions, an international alliance of FSHD patient advocacy organizations, […]
Participants at the ENMC workshop of FSHD registries International workshop in November reaches consensus on a global FSHD patient registry. If you are an individual with FSHD, or a family member, […]
[…] Arizona Group photo of the attendees at the European Neuromuscular Research Center’s workshop on pediatric FSHD. I was honored to attend the Pediatric FSHD European Neuromuscular Centre (ENMC) conference in […]
[…] in 20 people will live with a rare disease at some point in their life. FSHD-a Rare Disease The National Organization of Rare Disorders (NORD) recognizes Fascioscapulohumeral Muscular Dystrophy (FSHD) […]
[…] of an FDA-approved drug, sunitinib, as having potential therapeutic activity for FSH muscular dystrophy ( FSHD). This research, sponsored by Muscular Dystrophy UK, the FSH Society, and the French Sunitinib […]
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