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[…] (cover story); Patient’s brother competes in American Ninja Warrior on NBC to raise awareness about FSHD (cover story); The establishment of a new registry for FSH patients and family members […]
[…] MD, PhD. Please accept our heartfelt thanks for your dedication to unlocking the mystery of FSHD and for your guidance, concern and care for patients and their families worldwide. For […]
[…] Biosciences announced this week that it had received FDA Orphan Drug Designation for its experimental FSHD treatment, called AOC 1020. This does NOT mean the drug is now available for […]
[…] reflect the chance in name from Epic Bio to Epicrispr Biotechnologies. Leading-edge CRISPR biotech chooses FSHD as its first disease target Epicrispr Biotechnologies, based in the San Francisco Bay Area, […]
[…] Agencies (LHHSE). This year, the Society has requested $24 million FY2017 appropriations for NIH research on FSHD. Identical testimony was submitted to the Senate. The following table from the FSH Society’s testimony […]
