Connection
We create spaces for people with shared experience to meet, exchange knowledge, and feel understood.
ABOUT MDCOMMUNITY
A new non-profit, built in the open.
We are establishing a community-led organisation for people affected by muscular dystrophy. Our starting point is simple: listen carefully, work alongside people, and make ourselves useful.
WHY WE EXIST
Too often, people are left to join the dots themselves.
A diagnosis can bring a stream of new questions, but the answers are rarely in one place. People can find themselves repeating their story to different services, hunting for accessible information, or discovering practical help only after a difficult period without it.
Families and carers often become the organisers, researchers, and advocates at the same time as they are adjusting to change. Meanwhile, the knowledge of people living with muscular dystrophy is too often treated as an afterthought rather than expertise.
MDCommunity exists to help change that. We bring people, experience, and useful information closer together, and work alongside existing organisations where collaboration can make everyday life more manageable.
OUR MISSION
To build connection, amplify lived experience, and widen opportunity for people affected by muscular dystrophy.
We are here for people living with a condition, their families, carers, and the people working alongside them. Our aim is to create more ways for people to be heard and supported.
WHAT WE DO
We turn shared experience into practical action.
Our work will grow with the people involved in it. We are starting with connection, practical support, shared voice, and greater opportunity.
Support sessions
We are planning welcoming in-person and online sessions where people can connect, share experiences, and access peer support.
Voice
We make room for lived experience to inform conversations, decisions, and the priorities that affect daily life.
Opportunity
We work toward more accessible, informed, and inclusive communities for people living with muscle-wasting conditions.
HOW WE WANT TO WORK
01
Led by lived experience
The people affected by muscular dystrophy should have a meaningful say in what is built and how it works.
02
Useful in the real world
We are interested in practical change: clearer pathways, better understanding, and fewer barriers to everyday life.
03
Open about our progress
We will be honest about what is in place, what is still being developed, and what we learn along the way.
WHAT HAPPENS NEXT
NOW
Listen and learn
We are gathering perspectives, understanding where the gaps are, and building relationships with people who care about this work.
NEXT
Build with care
We will test ideas with the community and develop the structures, partnerships, and safeguards a responsible non-profit needs.
ALWAYS
Stay accountable
We will share progress honestly and keep people close to the decisions that shape this organisation.
WHERE WE ARE NOW
Early, intentional, and accountable.
We are an independent non-profit organisation, built around the experience and priorities of our community.
As the organisation develops, we will publish governance information, key policies, and meaningful updates here. We will be clear about our status and the stage we are at.
Our accountability promiseHelp shape the next chapter.
Your perspective can help make this organisation more useful from the start.