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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"Five families made the journey to Manchester to be part of the walk and between them they brought along over 70 walkers.Whilst the weather was grey and wet, nothing could dampen the mood as we all gathered on a rather overcast Sunday morning
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Our 2024 London Hope Walk was simply wonderful, thanks to the great supporters of Myotubular Trust. The sun shone brightly from start to finish as over 90 walkers walked 10k over 10 beautiful London bridges
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Joint Research Call with Great Ormond Street Hospital Charity (GOSH) 2025/26 Great Ormond Street Hospital Charity has announced their 2025/26 national funding call in child health research. Under this funding call £2.5M is available to...
To mark Rare Disease Day 2025, we were invited to participate in a podcast for Genomics England to explore the challenges and opportunities shaping the future of rare condition therapies. The podcast was hosted by Dr Ana Lisa Tavares,...
We are proud to share the news that McCarthy Stone have sponsored our new supply of fundraiser t-shirts. Our long-term supporter, Duncan, sought sponsorship from the company in honour of his beautiful little boy, Will, who had myotubular...
