Cure FSHD for ALL
Join the Movement for Inclusive Trials
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Our Mission
Cure FSHD For All is dedicated to advocating for access to treatments for all individuals with FSHD. This involves inclusion in clinical trials, access to compassionate use, and eventual insurance coverage for prescribed treatments. Our mission is to raise awareness of FSHD and encourage pharmaceutical companies to expand inclusion criteria, open innovative and inclusionary trials, provide expanded access programs to those severely affected and are unable to participate, and pursue broad-label approvals for therapies– ensuring everyone has the opportunity to contribute to finding a cure and have access to approved therapies with insurance reimbursement.​
Why is this important?
​Exclusion from clinical trials of individuals under 18, over 65, and those who use wheelchairs creates a dangerous gap in treatment accessibility. When these groups are not included, the resulting treatments may not be approved for their use, leaving them without insurance coverage for life-changing therapies in development. This exclusion perpetuates inequality, leaving some of the most vulnerable members of the FSHD community behind. By advocating for inclusive trials, we ensure that treatments are safe, effective, and approved for everyone, creating a fair and accessible future for all.
Here's how you can participate
Getting involved is easier than you think! You can amplify our message by sharing our movement on social media, signing petitions, or contacting policymakers and pharmaceutical companies to advocate for inclusive clinical trials.
Educate yourself and others about the importance of inclusive trial designs, and join our events and campaigns to spread awareness. Every voice adds strength to our cause, and together, we can ensure that treatments for FSHD are accessible to everyone who needs them.
Educational Resources
Explore our educational materials to deepen your understanding of FSHD and clinical trials. Our resources cover a wide range of topics to empower you to make informed decisions and take an active role in your health journey.
Insights and Information
Navigating Trial Participation
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