Welcome to BetterLife

Your health platform to accelerate research and a cure for FSHD

Take control of your FSHD journey and help develop treatments faster. BetterLife is a health and research platform for people with FSHD. Our mission is to provide you with tools and resources to better understand and manage your FSHD, all while contributing to groundbreaking research.

BetterLife is owned and managed by the FSHD Society. Learn more at fshdsociety.org/betterlife-fshd

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WHY SHOULD I PARTICIPATE?: As research and clinical trials advance, it is more important than ever for people with FSHD to be actively involved in research, in their own care, and in advocacy. When you join BetterLife FSHD, your voice becomes part of a powerful story. Every piece of information you share contributes to a deeper understanding of FSHD, helping researchers develop more effective treatments.
WHO CAN PARTICIPATE?: BetterLife is for anyone with Facioscapulohumeral Muscular Dystrophy (FSHD) living in the United States or its territories 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.
IS MY INFORMATION SECURE?: We are deeply committed to protecting your data and have taken all necessary steps to secure your information. BetterLife FSHD is hosted on a secure data platform that complies with important research and privacy regulations for protecting participant data in research. When your data is shared with researchers, your name and any personal information that could identify you is always removed.

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Help us reach our goal of creating a BetterLife community of 1000 people with FSHD!

Together, we are not just managing our FSHD, we are paving the way for a better future for everyone affected by FSHD.

By joining BetterLife, you make an important choice in taking control of your health..... you advocate for yourself and others by sharing your lived experience.

Amanda Hill

Senior Director of Research, FSHD Society

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