We campaign for improvements to care and support for people with muscular dystrophy and related neuromuscular conditions in the UK, joining forces with our patient-led campaigning Muscle Groups and parliamentarians across the UK.
- Access to high-cost drugs for rare diseases A cross party group of MPs and Peers, chaired by Dave Anderson MP, has published a new report into the future of access to high cost drugs for rare diseases and the challenges of regulation and reimbursement.
- Developing neuromuscular networks The charity continues to call for Strategic Clinical Networks for neuromuscular services to be set up across the country to improve specialist care for patients.
- Making society inclusive The Disability Discrimination Act has been in force since 1995, yet disabled people still have to struggle for equal access in all aspects of society.
- Equality in the workplace Young disabled people with the right qualifications and skills should have the same opportunities to gain employment as their non-disabled peers.
- Getting more care advisors and specialist health professionals in the UK Neuromuscular conditions are often complex, meaning patients require care from a multi-disciplinary team of specialist health professionals.
- Improving care in hospitals A worrying ignorance of neuromuscular conditions among hospital staff and lack of communication with NHS specialists are having a severely detrimental and long-lasting impact on the lives of patients with neuromuscular conditions.
- Improving physiotherapy services and better access to hydrotherapy Many patients with neuromuscular conditions in the UK do not receive the specialist physiotherapy necessary to treat their condition or have access to regular hydrotherapy sessions.
- Accessing specialist equipment Children and adults with muscle-wasting disease are forced to wait weeks, months and sometimes years to receive the wheelchairs that are essential for their health and quality of life.