Campaign for change

COVID-19 campaign

We are asking for the opportunity to help officials review the guidance and find ways to enable people and families with Duchenne in their lives to begin living their lives more fully again.

Raxone: A Guide for the Community

In partnership with fellow organisations, Muscular Dystrophy UK, Duchenne UK, the Duchenne Family Support Group, and DMD Pathfinders, we have produced two guides for families and healthcare professionals to educate and answer questions on the drug and EAMS process.

Action Duchenne ‘Where’s My Chair’ Wheelchair Campaign

Campaign for Action Duchenne

Action Duchenne lead our families, friends and supporters to work together to make change happen.

The campaign for Translarna

Since the start of 2015, Action Duchenne campaigned tirelessly for Translarna (ataluren) to be made available, exerting maximum external pressure upon NHS England, the National Institute of Health & Care Excellence, and the Scottish Medicines Consortium whilst working within their evaluation processes.

Access to medicines explained

Action Duchenne give you details on the EAMS programme to try and help explain explain the programme run by the MHRA and its importance to the Duchenne community