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News, blogs and stories

Read the latest news, browse other people's stories and find blogs about experiences you relate to. You can also read our publications like Target MD, and find our most recent press releases.

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Image of Tiffany stood hugging Roman with him beaming a smile
“I want to make the space my son will be entering for his additional needs a more diverse one”
How did you become interested in issues around equality, diversity and inclusion? When I found out…
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News
Changing places toilets
MDUK is delighted to share that over 100 new Changing Places toilets will be built across England following the allocation of the remaining funding from the Department of Levelling Up, Housing and Communities.
Following the allocation of the first round of funding last year, the remaining funds have now been…
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Blog
Researcher working within a research lab
“If you are constantly trying to cure sneezing, which is a symptom of a cold, then you won’t get very far” - my visit to Liverpool Universities
Back again, I thought with a smile on my face as the train pulled into the Liverpool Lime Street…
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Blog
Research image of a scientist in orange gloves working with a beaker
Researchers find potential key to treatment for myopathies in the pocket of an old muscle protein
Muscles contract so that we can move our bodies, breathe, swallow etc. Several muscle conditions…
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News
News-Update
NHS England agrees to allow access to Sapphire Trial to enhance treatments for SMA
On Monday 23 January, we let you know that NHS England had made a decision that made it impossible…
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Your story
A 2 image collage. On the left is a close-up image of Demi, smiling. On the right is one of Demi's pieces of artwork, of a stag stood on a path.
“My mouth is my tool, my superpower is my imagination”
I have always loved art. My love for art probably began in nursery. I remember loving the smell of…
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News
News-Update
Clinical trials to enhance treatments for SMA open in the UK but facing major challenges
On 24 January 2023, after this article was originally published,  we were informed by NHS England…
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News
Breaking News
NICE publishes final guidance recommending access to Duchenne muscular dystrophy treatment Translarna
Read NICE's guidance here. MDUK has been leading the fight for access to the treatment since 2016…
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News
Breaking News
Temporary change to eligibility for SMA treatment Zolgensma® in England
We advise that you contact your clinical team if you have any concerns. Update from NHS England…
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Your story
Joe is sat on a footstall in his living room, wearing an orange T-shirt that reads 'Straight outta dystrophin' in all-caps.
“Life with Becker muscular dystrophy is difficult, creativity is my escape”
As far back as I can remember, I’ve been a writer. From a young age I was inspired by the works of…
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