Welcome to BetterLife Canada

Your health platform to accelerate research and future treatments for FSHD

Take control of your FSHD journey and help develop potential 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.

The FSDH Canada Foundation will manage the educational content and other aspects of BetterLife FSHD Canada, while the research arm and dataset development has been led by the CNDR FSHD Clinical Working Group.

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First Name

Last Name

Phone Number

Password

Password Confirmation

Two Factor Authentication Method

SMS

Voice

I agree to the Privacy Policy & Terms of Use

Have Questions?

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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 that 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 Canada 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 a BetterLife Canada community of 2000 people living with FSHD!

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

It’s really comforting to have such an amazing community interface to keep me informed, help me living with FSHD, and to create hope and optimism looking forward!

Craig Kelley

Director, FSHD Canada Foundation and FSHD II diagnosis

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