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We are supporting this process as one of two ‘Patient Experts’, and our Director of Care, Campaigns…
News
In September 2023 we shared news that the European Medicine Agency’s (EMA) human medicines…
News
In January 2019, we partnered with the University of Oxford to form the MDUK Oxford Neuromuscular…
News
Limb girdle muscular dystrophy 2E/R4, also known as beta sarcoglyanopathy, is a progressive genetic…
News
We’re delighted to announce 24 neuromuscular centres across the UK are the recipients of our…
Blog
Understanding self-management support programmes
Self-management support (SMS) is a care programme…
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XLMTM and liver disease
Over the past few years, it’s become clear that some people with XLMTM can…
Blog
This Disability History Month, we really wanted to give people an opportunity to share what they…
News
In September we shared the news that NICE had published draft guidance on the use of the treatment…
Blog
Last week, Wednesday 22 November, the Chancellor of the Exchequer Rt Hon Jeremy Hunt MP, delivered…