Why BetterLife Matters
As FSHD research advances and more therapies are being developed, it is more important than ever for patients to be actively involved in research, in their own care, and in advocacy. More information on FSHD is critical to ensuring people will be able to access treatments. By joining BetterLife FSHD, your voice becomes part of a powerful story. Each piece of data contributes to a deeper understanding of FSHD, helping researchers and healthcare professionals develop more effective treatments. You're not just managing your FSHD: you're paving the way for a better future for everyone affected.
Why join BetterLife FSHD?
Ready to take charge of your FSHD journey? With every survey you complete and symptom you track, you're not just managing your health, you're driving research forward. Don't miss out on clinical trial information and customized resources. Take control of your story and shape a better future for everyone affected by FSHD
How BetterLife FSHD Works
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BetterLife FSHD is for anyone with FSHD living in the United States who is 1 year of age or older. Anyone under age 18* must have permission from a parent or legal guardian to join.
*If you are not an adult, your parent or legal guardian should sign up for BetterLife with their information, then create a profile for you in their account.
About the Platform
BetterLife FSHD is a pioneering platform dedicated to empowering people living with Facioscapulohumeral Muscular Dystrophy (FSHD). Our mission is to provide you with the tools and resources to better understand and manage your FSHD, all while contributing to groundbreaking research. Participation in BetterLife FSHD includes:
- Symptom Tracking: Monitor your health and track symptoms over time, gaining insights into your personal health journey.
- Customized Resources: Access a wealth of information and support tailored specifically to your needs and symptoms.
- Clinical Trial Matching: Discover research studies and clinical trials for which you may be eligible, opening doors to new treatment opportunities.
- Secure Data Contribution: Safely share your health data with approved researchers, knowing your privacy is protected.
Your participation is vital in driving research forward, leading to better treatments and, ultimately, a cure.