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patient-led listening sessions summaries: LGMD


The virtual FDA Listening Session on Limb Girdle Muscular Dystrophies was held on October 20, 2020. This was a patient-led listening session organized by a group of advocacy organizations focused on various aspects and genetic subtypes of LGMD. Fifteen presenters, all patients or family members representing twelve LGMD subtypes, gave presentations in a webinar format which included personal narratives, slide presentations, and videos.

The LGMD Listening Session was planned and organized by a consortium of advocacy organizations, focused either on raising awareness or assisting patients living with LGMD and related neuromuscular diseases, or on achieving clinical trial readiness and developing treatments for particular genetic subtypes of LGMD.

● The Speak Foundation www.thespeakfoundation.com (uniting all forms of LGMD)

● Coalition to Cure Calpain-3 (focused on LGMD2A/R1)

● Jain Foundation (focused of LGMD2B/R2)

● Team Titin (Focused on LGMD2J/R10)

● Kurt+Peter Foundation (focused on LGMD2C/R5)

● LGMD Awareness Foundation

● CureLGMD2i Foundation

● Beyond Labels and Limitations

● Breathe with MD

● Camron’s Cure (focused on LGMD2S/R18)

● LGMD2L Foundation

● LGMD1D/D1 DNAB6 Foundation


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