In life, there are friends and there are family, and then there are friends who become family - this is how I describe the Duchenne community - a worldwide family brought together by this one diagnosis - Shelley Simmonds (Parent)

When you receive the diagnosis that your child has Duchenne muscular dystrophy it is devastating. Many families find that they are overwhelmed and unable to cope during the first few weeks and sometimes months. 

There are many questions... why? what is Duchenne? what potential treatments are there? what about clinical trials? how will I talk to my child about Duchenne?

It can be a very confusing time, coupled with feeling alone and afraid for the future. 

Hear from other families

You are not alone

The Action Duchenne team have supported hundreds of families throughout their journeys.

The first contact is usually a telephone call, where you can tell us your story and we can help support you.

We can give you the details of specialists, such as where to get a good buggy/wheelchair, to housing adaptations and how to access clinical trials.

We can arrange for you to join The DMD Registry and you can speak with our specialist research team to fully understand the science behind Duchenne.

'The diagnosis and management of Duchenne muscular dystrophy - A guide for families' - download here.

We support you throughout any fundraising you wish to do, help your company get involved and also invite you to the Action Duchenne International Conference where you can equip yourself with vital information. 

Hear from other families

Helping you in your journey

We are here for you. We really are. Nearly half of our team members are Duchenne parents, nearly all our Trustees are Duchenne parents, grandparents or family members.

Whatever you are feeling, we all understand.

We can answer your questions, provide support, give you hope and help you in your journey, whichever stage you are at.

Join us as we carve the future

You guys do so much in raising awareness and funds for medical research. We really commend all of you on your time and efforts and determination - Oliver de Laslo (Parent)

Related topics