Last week, Muscular Dystrophy UK attended the International Congress on Neuromuscular Diseases (ICNMD) in Florence, bringing together researchers, clinicians, industry and patient organisations from around the world.
Following last month’s debate in Parliament, today, Thursday 16 July 2026, the UK government announced that newborn screening for spinal muscular atrophy (SMA) will be fully rolled out across England. This means that every baby in England will get tested for SMA while a national evaluation programme runs to see if the condition should be permanently added to the NHS newborn blood spot test (formerly called the heel prick test).
We are launching the neuromuscular service mapping project – helping provide strong evidence to campaign for better neuromuscular services.
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Take our community survey. We want to know what matters to you most today, what financial and healthcare barriers you still face. Help change the future of muscle wasting conditions.
For Ullrich Awareness Day, Amelie’s mum shares how the right diagnosis, specialist support and a determination to focus on what Amelie can do have shaped their journey.
Today, Thursday 9 July 2026, the Timms Review interim report lays out plainly what we’ve been hearing from our community for many years – Personal Independence Payment (PIP) is not fit for purpose.
Join our campaigns webinar to hear about why we’ve launched our campaigning work, and why it matters now more than ever.
After his younger brother Tom sadly died 24 years ago, Sam channelled his grief into fundraising. He is taking on a 100k challenge in memory of his brother Tom.