AboutDuchenne UK
Duchenne UK works to create a future without Duchenne, while supporting those affected today.
Our mission to End Duchenne
We work tirelessly to challenge barriers, deliver practical solutions, and speed up progress for families affected by Duchenne. We collaborate with leading researchers, clinicians, industry and our charity partners, to deliver hope and measurable progress for people living with Duchenne in the UK.
Together, we are improving care, accelerating access to potentially life-changing treatments, pioneering assistive technologies, and creating a thriving research landscape.
Our impact is measured by the tangible improvements we deliver in care, treatment access, and research.
35M
We have raised over £35 million to fight Duchenne
81 trials
We supported 81 clinical trials, accelerating the development of new treatments for Duchenne
Change makers
We identify barriers to progress and create solutions to drive change
9M
Our signature fundraising event the Duchenne Dash has raised over £9 million
NICE
Developed NICE curated cardiac and respiratory care guidelines and 8 other best practice guides helping everyone access the best care
Impact reports
You can read more about our achievements in our impact reports.
Our story
Duchenne UK is a charity that was set up in 2012 by Emily Reuben and Alex Johnson after both of their sons were diagnosed with Duchenne. The founders began their journey as two mothers united by this devastating diagnosis for their sons, but their determination transformed them into globally respected advocates and thought leaders.
They set up Duchenne UK to tackle some of the big challenges in drug development in their search for a cure for Duchenne. What started as a personal mission evolved into a professional crusade, marked by rigorous analysis of the Duchenne research and care landscape and an unwavering commitment to systemic change.
Their ability to combine lived experience with scientific and policy knowledge has broken boundaries, accelerated access to clinical trials, shaped national guidelines, and influenced regulatory decisions.
Today, each holds an OBE in recognition of their extraordinary impact, symbolising how their dedication and expertise have redefined what patient-led advocacy can achieve, driving innovation and change, and hope for thousands of families.
Thanks to their unwavering commitment and determination, in 14 years, Duchenne UK has raised more than £34 million to:
Fund pioneering medical research into the development of transformative treatments for Duchenne, including clinical trials of medicines that are now approved treatments for Duchenne.
Create the Duchenne Hub UK, a Duchenne clinical research network of 11 hospital sites across the country which, since its launch in 2016, has led to more clinical trials of Duchenne treatments coming to the UK than ever before, giving more than 570 children living with Duchenne access to new treatments.
Set up Duchenne Care UK, a national programme for patients with Duchenne establishing best practice across 9 disciplines involved in Duchenne clinical care as well as psychosocial guidelines for education professionals, to ensure healthcare professionals and parents know exactly what treatments and medical care children and adults with Duchenne need and can access in the NHS.
Develop innovative assistive mobility technologies, such as Elevex to support the independence of people with Duchenne.
Form HERCULES, a multinational collaboration set up by Duchenne UK to develop tools and evidence to support health technology assessments and reimbursement decisions for new treatments for Duchenne.
Our organisation
We are a solutions focused organisation driven by a clear mission, determined to drive change and deliver progress for everyone living with Duchenne.
