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FSHD Stories
Each person living with FSHD has
a unique and powerful story to tell
We support all people, families and caregivers living with rare diseases, this Rare Disease Day and every day

Living with FSHD has profound impacts on every part of peoples’ lives, from work and socializing to family life. Community members have shared moving examples of living with FSHD with our team and have told us what it would mean to them to have a transformative therapy for their disease.

Laura A. and Chelsea M. photo

Meet Laura and Chelsea

Joint perspective of a mother and daughter’s journey with FSHD

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Howard Chabnew photo

Meet Howard

Living with loss, making adjustments: One man’s journey with FSHD

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Rachel S. photo

Meet Rachel

“If there was a treatment for FSHD, it would be life-changing for me.”

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Ian R. photo

Meet Ian

“So many therapies in development right now. I’m very, very excited.”

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Sam M. photo

Meet Sam

“I would love to see some type of therapy that would regrow muscle tissue.”

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Rare Disease Day
AT DYNE WE SUPPORT ALL PEOPLE, FAMILIES AND CAREGIVERS LIVING WITH RARE DISEASES THIS RARE DISEASE DAY AND EVERY DAY
Rare Disease Day
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