Myotubular and Centronuclear Myopathy cause life-threatening muscle and breathing weakness in infants and adults. But with a little help, they can live lives that inspire us...
Since 2006 we have invested in pioneering global research to find a treatment or cure, leading to us seeing the first patient trials...
We help the ‘here and now’ empowering patients and their families with latest best practice and shared patient experiences to discuss with their doctors...
Changing the course of the conditions
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Perspectives from parents and professionals on the conditions
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News and updates from our scientific community
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The first Liverpool Hope Walk will take place on Sunday 14th September
You have the option of walking either 5km or 10km, starting on Thomas Steers Way, Liverpool ONE
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Join us on Saturday 20th September 2025 for our 10k 10 bridges walk starting at London Bridge and ending in Battersea Park
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On 15th July 2025, Astellas Pharmaceuticals Inc. announced that they have received approval from the US Drug Regulator, the FDA, to move forward with a Phase 1/2 clinical trial of their gene therapy product ASP2957. The trial - which will...
Join us at 11.00am on Sunday 14th September for a new Hope Walk for 2025 - the Liverpool Hope Walk. Our annual Hope Walks have been held since 2008, having been instigated by a wonderful group of supporters to whom we will be forever...
Read about last year's, 2024 London Hope Walk here! Join us at 10.30am on Saturday 20th September for this year's London Hope Walk. Our annual Hope Walk has been held since 2008, having been instigated by a wonderful group of supporters –...
