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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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Close up of wheel spokes with a header overlayed reading 'Community Survey 2024 - our findings'
How you’re shaping our work
At the end of 2023 we wanted to build a better understanding of the priorities of people living…
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News
News update
We're calling for better understanding of neuromuscular conditions to speed up referral and improve vital support
Findings from our recent survey reveal that people living with a muscle wasting or weakening…
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Blog
There’s not a scenario with a degenerative condition where you’ll turn around and say my care needs are less than they were last year, it’s never going to happen.
The Continuing Healthcare process needs to be appropriate to progressive degenerative conditions
Ben: I have Limb Girdle Muscular Dystrophy, and I’m 35 years old. I studied video editing at…
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Blog
News Update
NICE publishes draft guidance on vamorolone for treating Duchenne muscular dystrophy
The National Institute for Health and Care Excellence (NICE) has published draft guidance that…
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Blog
A picture of parliament from sky view.
What are the key takeaways from the Government’s Spring Budget?
Cost-of-living Disappointingly, the new measures announced do not offer enough support for our…
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Blog
A man is speaking to a crowd of people in a classroom setting.
Overview of our successful Care Advisors Conference 2024
The two-day event featured 12 engaging sessions, covering a wide variety of topics. Presentations…
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News
News update
Major concerns over the future of adult neuromuscular care in Northern Ireland
Patients have been informed that the current lead consultant will be leaving at the end of March…
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News
News update
Government fails to act on their 2022 commitment to increase financial support through the Disabled Facilities Grant
Today the BBC have highlighted that just after announcing the Disability Action Plan, the…
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Blog
Jack, a man in a wheelchair is smiling at the camera wearing a suit and orange tie at a wedding.
Your heart-warming words of wisdom on growing up with a muscle wasting condition
This Disability History Month, we really wanted to give people an opportunity to share what they…
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Blog
Jack, a man in a wheelchair is smiling at the camera next to Lauren wearing a muscular dystrophy uk t shirt in her chair and a picture of Lauren as a child
Disability History Month: your school experiences of Physical Education  
Jack: The theme of this year’s UK Disability History Month is childhood and youth, and my colleague…
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