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If you’re not getting e-news from us, you are missing out!
We use email for every important piece of communication that we send out. Using email rather than paper mail saves the Society hundreds of thousands of dollars a year, reduces pollution, and shrinks our carbon footprint. If you are not getting email from us, it means we don’t have your email address. And it means you are missing the chance to participate in our most important activities, such as these recent happenings:
- Volunteer for clinical trials – we need both your email and USPS address because volunteers are recruited by geographic region. We anticipate several new trials soon! If you want targeted information related to clinical trial in your area, please fill out out patient contact registry HERE
- Voice of the Patient Forum – landmark meeting in which more than 400 patients and family members gave testimony to the FDA
- Clinical trials and research – opportunities to volunteer for vitally important studies needed to develop treatments for FSHD
- FSHD Connect Classroom – an immersion in the latest medical and drug development advances by the world’s top experts
- FSHD nationwide chapter program – with 30 chapters in the US and Canada holding regular gatherings and events
- FSHD University – monthly lectures, Wellness and Sharegiver Hour meetings, FSHD Radio podcasts featuring programs to develop your personal knowledge and resilience
- Nationwide Walk & Roll to Cure FSHD – Thousands of people joined to raise more than $560,000 in 2020.
Enhance your well-being today. Speed up the development of treatments for the future.
Get connected by signing up with your email address below. We will never share your contact information with anyone outside the FSHD Society without your permission.