A health & research platform
providing tools to better understand
and manage your FSHD
Join BetterLife FSHD today!
About BetterLife FSHD
BetterLife FSHD is a pioneering research 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 and leading to future treatments and cures.
Who Can Join
BetterLife FSHD is for anyone with FSHD living in the United States who is 1 year of age or older. However, 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.
Why It 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 future treatments.
You're not just managing your FSHD: you're paving the way for a better future for everyone affected.