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I knew I was gay since I was around fourteen, but I spent nearly twenty years hiding in plain sight…
News
We reported recently on a key step in the US Food and Drug Administration’s (FDA) pathway for…
Blog
Faster diagnosis is vital
The first speaker on the panel, Rob Burley, Director of Care, Campaigns…
News
UPDATE 06/07/2023 - Edgewise Therapeutics has announced the results from a study evaluating their…
Blog
The latest FSHD research updates from the FSHD Society’s 30th annual International Research Congress
Last week I had the pleasure of attending the FSHD Society’s 30th annual International Research…
Your story
We call having FSHD our superpower, and the positive thing about having the condition is certainly…
Your story
For much of my late teens and early twenties, the boys would make comments like “Are you scared of…
News
We appreciate that watching this drama may lead to challenging emotions or raise questions or…
News
Pompe disease is a chronic, rare, genetic, progressive metabolic disease which results in severe…
Blog
As well as awareness, the week is also designed to help those who don’t necessarily identify as a…