Efgartigimod (Vyvgart), a treatment for myasthenia gravis, has not been recommended for use on the NHS in England. Although doctors can prescribe it privately, this decision means that anyone eligible for the treatment would need to cover the cost themselves.
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Despite having symptoms for over a decade, Sarah was only diagnosed with myasthenia gravis in 2024. Now determined to help others get earlier diagnoses and feel less alone, she’s written about her condition progression whilst not knowing what was happening to her body, how she finally received a diagnosis, and the community she’s found through the charity’s myasthenia gravis support group.
Declan was diagnosed with Duchenne muscular dystrophy at age 8. After his diagnosis, his family set up a Family Fund to raise money for vital research, hoping to improve the lives of children like Declan.
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Having recently joined the streaming community on Twitch, we caught up with Liam Quinn to hear about a gaming event we hosted in London and why online gaming is a great way to raise money, awareness and foster a community.
The company, PepGen, has announced it is stopping the development of PGN-EDO51. The treatment was being tested for Duchenne muscular dystrophy in people who might benefit from exon 51 skipping. This means all testing of the treatment will now come to an end.