How many people are living with muscle wasting conditions in the UK? We’re launching a new study to find out

21 October 2025

As part of our new ten-year strategy to transform the lives of people affected by muscle wasting and weakening conditions, we’re launching a new research study to uncover how many people are affected across the UK and where support is most urgently needed.

Living with a muscle wasting condition

Right now, we don’t know how many people are living with muscle wasting and weakening conditions across the UK. The most recent research suggests 110,000 people – but that figure is based on old data. The real number could be higher.

Without up-to-date information, it’s hard to know who needs support, where services are stretched, or what care will be needed in the future.

That’s why we’re inviting researchers to help us build the evidence needed to drive change. This new study will help us:

• Know how many people are affected and how many are newly diagnosed each year
• Understand who is affected, including differences by age, gender and ethnicity
• Map where people are affected, to highlight areas that may need more care and support
• Explore whether these conditions are more common in communities that may face extra barriers to care

By building this evidence, we can improve support, influence policy, and make sure the NHS is ready for the future. Crucially, it will help us tackle inequalities – so that everyone gets the care they deserve and no one is left behind.

“This study is vital to understand the true scale of muscle wasting and weakening conditions across the UK. With that knowledge, we can identify unmet needs, close gaps in care, and drive lasting change for everyone affected. It’s also the first major piece of work from our new ten-year strategy – building the evidence base that will lead to better care, fairer access, and a world without limits for people living with these conditions.” Director of Research and Innovation, Dr Kate Adcock

Our focus for research funding

This study will be the first of our new Neuromuscular Challenge Grants. These grants will fund research that tackles big challenges affecting people living with muscle wasting and weakening conditions.

We’re also now accepting applications for our 2026 research grant round and inviting researchers to submit ideas for projects that could make a real difference. Guided by our new research strategy, we have a particular emphasis on funding research that improves quality of life today while continuing to build knowledge that will shape future treatments and services. It’s about helping people live well now, and ensuring progress continues for the future.