Our campaigning work

Learn more about our work to improve the quality of life for people living with a muscle wasting condition.

A benefits system that truly supports everyone

We must urgently demand a benefits system across the UK that recognises all our needs, and our right to live independently and with dignity.

Sign the petition. Stand with everyone that lives with a muscle wasting condition and who receives PIP or ADP.

Change is possible. And it starts with us acting today.

Sign our petition

Our priority campaigns

Healthcare

Everyone should benefit from the best care possible, no matter where in the UK they are. That means faster, better and equitable access to healthcare.

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Newborn screening

Newborn screening for SMA is already used around the world and has just begun in Scotland. But England, Wales and Northern Ireland are lagging behind. Changing this could be lifesaving.

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Access to treatments

We’re campaigning for access to new treatments and a system that’s ready for the treatments that come next. We won’t stop here.

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Welfare and employment

Decision makers across the UK must improve key benefits and break down barriers to employment – over half of people living with a muscle wasting condition feel financially insecure.

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Why we are campaigning

Over half of people with muscle wasting conditions feel financially insecure

47% of people with muscle wasting conditions were misdiagnosed at some point

There are five treatments for three muscle wasting conditions currently in the approval process

In some areas, there are no care advisors to coordinate care for people living with a muscle wasting condition

Working with politicians and decision makers

We work with politicians and policy makers across the four nations – England, Northern Ireland, Scotland and Wales – to ensure that people with muscle wasting conditions are heard and considered when decisions are made affecting them.

Recently we’ve been meeting with Health spokespeople from the main parties in Westminster to discuss newborn screening for Spinal Muscular Atrophy, access to treatments and neuromuscular services. We’ve also been over in Northern Ireland meeting the Health Minister and members of the Health Committee.

In May, Scotland and Wales held elections. We’re speaking to the newly elected representatives about muscle wasting conditions and making sure voices in our community are heard across the UK.

If you’re a politician or policymaker and want to work together, please contact us at campaigns@musculardystrophyuk.org.