Help shape our charity together

As a service user-led organisation, the voices of people living with muscular dystrophy and related neuromuscular conditions are at the heart of everything we do. We believe the best services are created with the people who use them, not simply for them. That’s why co-production is central to the way we develop our services, plan for the future, and make decisions across the charity.

Our Service User Focus Group brings together those people who want to help shape the future of the Muscular Dystrophy Support Centre. Meeting quarterly, the group provides a space to discuss new ideas, review existing services, identify priorities, and influence the direction of the charity.

The Focus Group doesn’t just offer feedback. Members actively contribute to projects across the organisation, helping to develop resources, improve services, support events, shape communications, and bring new initiatives to life. You can work alongside our staff on projects that make a real difference, from improving our website and developing NHS resources to helping shape new services and initiatives, and much more.

There’s no expectation to attend every meeting or commit to ongoing projects. Some people simply come along to share their views, while others choose to become more involved in specific pieces of work. Every contribution is valuable, and you can participate in a way that suits your interests, availability, and health.

If you’re a service user or family member and would like to help shape the future of the charity, we’d love you to join us. Email getintouch@mdsupportcentre.org to find out more.