Get support for your family

If your child or a family member is living with Duchenne muscular dystrophy, we’re here to support you at any point on your journey, from diagnosis into adulthood. We provide information and resources and opportunities to connect with other families.

Family Saul Family Saul

Help in an emergency

Because children with DMD have weaker muscles, accidents and emergencies can be more serious for them than other children. They will need special medical treatment and should have a documented emergency plan.

Call 999 in an emergency and tell the emergency services your child has DMD. A&E staff should follow the guidance on the Duchenne Accident & Emergency website, linked below.

How to prepare for emergencies Guidance for A&E staff

Find the support you need

A mother and boy hugging A mother and boy hugging

Help at diagnosis

A diagnosis of DMD can be overwhelming. As a parent-led charity, we understand what you're going through.

Resources for newly diagnosed Resources for newly diagnosed
A boy with DMD and his brother A boy with DMD and his brother

Support for your teenager

As children with DMD grow older, their needs change. We're here to help you prepare for adolescence and adulthood.

Resources for transitioning to adulthood Resources for transitioning to adulthood

Education support

Some young people with DMD have additional special educational needs. Find out how to get support at school and beyond.

Get educational support Get educational support

Parent Information Days

Duchenne UK run information days to update parents and family members on the latest research, clinical trials and care advice. They also give you the chance to connect with other families affected by DMD.

Find out more about Parent Information Days
Boy wearing facemask

Support during the pandemic

There is a lot of worry and confusion throughout the Duchenne community about the risks of coronavirus (COVID-19) for people with DMD. We are providing support for families through a series of webinars and releasing the latest guidance from neuromuscular experts.

DMD and COVID-19 guidance

Felix's story

"In 2013 we found out by a routine visit to hospital that Felix, one of our four children, had an incurable terminal disease, DMD.

After hiding and crying and keeping our pain locked away we now see a future not to be feared: it's to do something, it's to raise money, to make people aware, to fight for Felix and enjoy the future with him."

Lisa, Felix's mum

Join the fight to end Duchenne

Find out more

Young boy with doctor having a heart check up in hospital Young boy with doctor having a heart check up in hospital

Understanding DMD

Understand more about the genetic causes, symptoms and stages of Duchenne muscular dystrophy.

Find out more about DMD Find out more about DMD
A nurse from Leeds Children's Hospital A nurse from Leeds Children's Hospital

Clinical trials for DMD

Find out about joining a clinical trial for DMD treatments on the DMD Hub - a network of trial sites.

Find out about clinical trials Find out about clinical trials
stethoscope on bed stethoscope on bed

DMD Care UK

We're working to ensure DMD patients receive the best care, no matter where in the UK they are based.

Visit the DMD Care UK site Visit the DMD Care UK site

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