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NEWS and UPDATES

Givinostat: more evidence needed before a decision on NHS access in England
August 11, 2025
Givinostat, a potential treatment for Duchenne muscular dystrophy, is being reviewed to see if it should be made available on the NHS in England. A decision hasn’t been made yet, as the committee has asked for more evidence to help them decide. This has caused a delay, which we’re disappointed by, and adds to the challenges families face in accessing treatment.
Read Givinostat: more evidence needed before a decision on NHS access in England
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Givinostat: more evidence needed before a decision on NHS access in England
August 11, 2025
Read Givinostat: more evidence needed before a decision on NHS access in England
How gene editing could transform muscle repair
July 25, 2025
Read How gene editing could transform muscle repair
Our £1 million investment to transform clinical trials for Charcot-Marie-Tooth disease
July 15, 2025
Read Our £1 million investment to transform clinical trials for Charcot-Marie-Tooth disease
Our work with partners to speed up the introduction of newborn screening for Spinal Muscular Atrophy
July 9, 2025
Read Our work with partners to speed up the introduction of newborn screening for Spinal Muscular Atrophy
How we’re supporting the future of research into muscle wasting conditions
July 4, 2025
Read How we’re supporting the future of research into muscle wasting conditions
Second treatment for myasthenia gravis not approved for NHS use in England
June 26, 2025
Read Second treatment for myasthenia gravis not approved for NHS use in England
New FSHD treatment shows early promise in clinical trial
June 16, 2025
Read New FSHD treatment shows early promise in clinical trial
Our Young Ambassador Carmela makes history as youngest ever MBE
June 13, 2025
Read Our Young Ambassador Carmela makes history as youngest ever MBE
“It’s a fitting legacy for my son”: Our Patron Ian Corner recognised in King’s Birthday Honours List
June 13, 2025
Read “It’s a fitting legacy for my son”: Our Patron Ian Corner recognised in King’s Birthday Honours List
Treatment for myasthenia gravis not approved for NHS use in England
June 4, 2025
Read Treatment for myasthenia gravis not approved for NHS use in England
Volunteers’ Week – thanking our volunteers
June 2, 2025
Read Volunteers’ Week – thanking our volunteers
Development of Duchenne muscular dystrophy treatment PGN-EDO51 stopped
May 29, 2025
Read Development of Duchenne muscular dystrophy treatment PGN-EDO51 stopped

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