Our campaigns
By gathering evidence from patients and clinicians on a national and local level, we are actively campaigning across the UK to make sure that adults and children living with rare conditions are able to access the essential care services they need.
People living with muscle disease are working with us on many high profile campaigns:
- Building on the Foundations – improving access to specialist care
- Trailblazers – the young campaigners network
- Inquiry by the All Party Parliamentary Group for Muscular Dystrophy
Join the fight to give a voice to everyone with muscle disease across the UK.
East Midlands:
- All Party Parliamentary Group Inquiry The All Party Parliamentary Group for Muscular Dystrophy has published the Walton Report after investigating access to specialist neuromuscular care. The Group is calling for further evidence and monitoring implementation of the report’s recommendations.
- State of the Nation - National Patient Survey Families with rare illnesses are experiencing severe financial hardship and many are seeing loved ones’ lives drastically shortened due to a lack of specialist care.
- Building on the Foundations Demanding immediate action to be taken in order to close alarming gaps in the provision of essential services and the improve care received by families and patients.
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