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This free event, at the T3 Conference Centre, Lisburn, provided practical information and support…
Blog
Living with CMT has limited areas of my life. Some of the everyday things that people without my…
News
The National Institute for Health and Care Excellence’s (NICE) have published draft guidance ‒…
News
On Friday, 22 September, PTC Therapeutics, the company that manufactures Translarna, issued a…
Blog
Reducing inequalities
Tackling health inequalities is a long-standing aim of both the UK…
Your story
When we first learned that Esmae and Grace both had limb-girdle muscular dystrophy, we found the…
Your story
I have rigid spine syndrome muscular dystrophy (RSMD). My condition mostly affects my back, neck,…
Blog
The second, and final, round of funding from the Department for Levelling Up, Housing and…
Blog
In January 2021, the UK Government published the UK Rare Disease Framework, laying out the 4 main…
News
The survival of people with DMD has significantly increased over recent years owing to improvements…