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Community survey

The current health and financial systems are not working for many people living with a muscle wasting condition and we want to change this. But we can’t do it without you.

To make a real and lasting difference it’s vital that we know about your experience: the barriers you face, and where things could be better. That’s why we’ve launched a new community survey.

Your input makes a huge difference. Everyone’s voice counts. We will ensure yours is heard. 

The importance of taking part

Every voice counts – each response builds a stronger case for change. The more people who take part, the greater the impact we will have.   

We’d especially like to hear from people living with a muscle wasting condition, their families and carers.  

The survey will take 5-15 minutes to complete, and you can enter a prize draw to win one of five £50 vouchers. 

Take part today and make sure your voice is heard. 

You can also call 020 7803 2866 to complete it over the phone.  

Complete the survey for your chance to win

Complete our survey and enter a prize draw to win one of five £50 vouchers!

We’ve successfully used your experiences to influence national decisions, including talking to NHS Scotland about how to properly support the muscle wasting community and in the new NHS 10-year health plan for England where we strengthened the focus on rare diseases.

More recently, we’ve used financial information you provided for the Timms review, which is looking at how benefits can be fairer for disabled people in England, Northern Ireland and Wales.  

But we know things change quickly and to ensure that the information we have is up to date and reflects your current circumstances, we’re at a point where we need to gather more recent experiences of people. 

With your permission, we will take what you share directly to politicians, healthcare leaders and hospitals across the UK.

Alongside this survey, we’re also speaking to healthcare professionals and mapping services across the UK so we can better understand where improvements are needed

Together we can make change happen. 

Complete our survey today and help change the future of muscle wasting conditions.

About the survey

Questions on our community survey

If you have any questions on our community survey, please email our campaigns team.