Resources for FSHD Patients

Get Involved in FSHD Research as a Patient

Patient participation is essential to advancing FSHD research. Your volunteer efforts are invaluable.

Ways you can help:

• Participate in a clinical trial study
  Your participation helps find answers and solutions. Learn more >>
  View active studies
• Patient focus groups
  Give specific feedback about functional motor evaluations and other common clinical procedures.
• Patient advisory committees
  Provide insight about running a study, recruitment, retention, and results dissemination.

Resources

• Patient newsletters
• Printable handouts
  • How to Get Involved in FSHD Research (PDF)
  • FSHD CTRN Handoout (PDF)
• Webinars
  • FSHD 101 with Dr. Samantha LoRusso
  • The Resolve Study
  • COVID-19 Update with Ghinwa Dumyati, MD, Rabi Tawil, MD and Jeffrey Statland, MD
• Websites
  
  • Friends of FSH Research
  • FSH Society
  • Muscular Dystrophy Association FSH, FSHD
  • National Registry for Myotonic Dystrophy (DM) & Facioscapulohumeral Dystrophy (FSHD)