Living longer, healthier fulfilling lives
It is possible to achieve remarkable things with Duchenne Muscular Dystrophy (DMD)
With the right help and support we can travel around the world, gain a PhD, become a published author, graphic designer, music promoter…the sky’s the limit!
Adults with DMD are living longer. There are an estimated 500 people in the UK aged over 18 with Duchenne plus many more with Duchenne-like types of dystrophy. No-one expected us to live this long. As a result, organisations and agencies that were originally created to advise and support our parents/carers have been slow to respond to our needs.
Choice, control and quality of life
We believe everyone has the right to live a full and active life and make a meaningful contribution to the world around them
We set up DMD Pathfinders, a user-led organisation to promote choice, control and quality of life for teenagers and adults with DMD in the UK. We campaign for improved standards of health and social care . We also provide advice, guidance and support to teenagers and adults with DMD on issues such as independent living, housing, employment and welfare rights.