Duchenne UK
Description
Duchenne UK is the leading Duchenne muscular dystrophy (DMD) charity in the UK. Founded by two mothers whose sons were diagnosed with DMD in 2011, the organisation is dedicated to finding treatments and a cure for this muscle-wasting disease. They follow an innovative model that connects researchers, industry, the NHS, and families to accelerate medical progress.
Key Offerings & Services
- Funding Medical Research: They have invested over £27 million in groundbreaking research, projects, and clinical trials. This includes funding for gene therapy, stem cell research, and new treatments like Vamorolone.
- Improving Clinical Care: Through DMD Care UK, they collaborate with medical experts to establish national clinical recommendations, ensuring all patients receive a high standard of care.
- Clinical Trial Support: They fund the DMD Hub, which provides the clinical trial staff and infrastructure needed to give more patients access to research and innovative treatments.
- Family Resources: They provide a Family Folder for the newly diagnosed, educational support for schools, and emergency medical guidance.
- Community Connection: Duchenne UK supports over 40 Family and Friends Funds, allowing families to fundraise for specific research while connecting with a supportive community.
- Technological Innovation: They invest in technology to improve the quality of life and independence for those living with DMD.
How to Get Involved
- Fundraising: You can join events like the Duchenne Dash, a flagship cycling event from London to Paris.
- Donating: Public generosity directly funds their portfolio of research projects.
- Information: Their official website offers extensive resources for families, researchers, and healthcare professionals.
Contact
Website
Email
Address
Duchenne UK, Unit G24, Shepherd’s Building Charecroft Way Hammersmith
Zip/Post Code
W14 0EE
Duchenne UK, Unit G24, Shepherd’s Building Charecroft Way Hammersmith
