FSHD SOCIETY
Programs
FSHD Research Initiative
RESEARCH THE SOCIETY SEEKS TO ACCELERATE RESEARCH TO EXPEDITE TREATMENTS AND A CURE FOR FSHD MUSCULAR DYSTROPHY. ORGANIZING AND FUNDING RESEARCH INTO THE CAUSES OF FSHD, AND, ULTIMATELY DEVELOPING TREATMENTS AND A CURE, IS THE SOCIETY'S CORE MISSION.GeographiesNot indicatedDatesJan 1, 2024 – Dec 31, 2024Source990No causes providedNo populations provided–$1.9MPatient Advocacy and Education Program
PATIENT ADVOCACY AND EDUCATIONTHE SOCIETY SEEKS TO ENLARGE, ENGAGE, & EMPOWER AN ACTIVE GLOBAL COMMUNITY. THE FSHD SOCIETY'S PATIENT ADVOCACY AND EDUCATION PROGRAMS DIRECTLY BENEFIT PATIENTS AND THEIR FAMILIES BY CONNECTING FSHD MUSCULAR DYSTROPHY PATIENTS AND FAMILIES TO HEALTHCARE PROVIDERS, RESEARCH INSTITUTIONS, AND SUPPORT GROUPS, PROVIDING HIGH-QUALITY EDUCATIONAL MATERIALS, ORGANIZING EDUCATIONAL MEETINGS AND CONFERENCES, AND CREATING OPPORTUNITIES AND SUPPORT FOR ADVOCACY AND RAISING PUBLIC AWARENESS.GeographiesNot indicatedDatesJan 1, 2024 – Dec 31, 2024Source990No causes providedNo populations provided–$2.3M
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