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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…
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In January 2021, the UK Government published the UK Rare Disease Framework, laying out the 4 main…
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The survival of people with DMD has significantly increased over recent years owing to improvements…
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SMA newborn screening currently takes place in many European countries but thus far hasn't been…
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The Northern Ireland Rare Disease Action Plan is the second of four action plans to be published,…
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The England Rare Diseases Action Plan is the first of four action plans, which will cover each of…
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The questionnaire sets out 23 actions that have been developed for the implementation of the UK…
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NICE has put forward key changes to the way they assess medicines and treatments, which should…
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We were pleased to have so many of our Northern Ireland community attend and hearing all the…