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.
Interested in participating or learning more? Contact Michaela Walker. - Patient advisory committees
Provide insight about running a study, recruitment, retention, and results dissemination.
Interested in participating or learning more? Contact Michaela Walker.
Resources
- Printable handouts
- Websites
- FSHD Quarterly Newsletter - Newsletter Signup
- Spring 2023 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- Winter 2022 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- Summer 2022 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- Spring 2022 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- Winter 2021 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- 09/07/2021 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- 04/13/2021 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- 12/07/2020 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- 09/09/2020 - UPDATED: Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- 09/09/2020 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- 05/26/2020 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- 03/18/2020 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- 02/24/2020 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- 11/05/2019 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- 07/19/2019 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- 04/09/2019 - Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"
- Webinars
Clinical Trials
View all Facioscapulohumeral Muscular Dystrophy related clinical trials in the state of Kansas.