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Latest news and updates from DMD Pathfinders and our members.

News

Reflecting on the Action Duchenne conference

BY JON REY-HASTIE CEO OF DMD PATHFINDERS Today I have been taking a more leisurely pace to recover from a really busy weekend at the Action Duchenne conference. I found it particularly tiring this year, probably because I have had to coordinate it or dealing with a busy and extended moving process. As a result… Read more »

Getting research and treatments to adults

BY JON REY-HASTIE CEO, DMD Pathfinders  Last Friday DMD Pathfinders co-hosted a workshop with Duchenne UK dedicated to research for adults. Specifically, in the context of a rapidly developing research pipeline of new treatments for DMD, we were asking: how can we ensure these treatments benefit adults? The meeting was held at the International Centre… Read more »

DMD Pathfinders Nutrition Guide now out!

Information and advice on nutrition for adults with DMD. DMD Pathfinders is delighted to launch our Nutrition Guide for adults with Duchenne. We have worked with  health professionals from around the world to pull together existing best practice and experiences of adults  with DMD into a useful resource. User experiences were gathered from a survey of… Read more »

Join us at our NMD Fest event on 18-19 July

NMD Fest – 18-19 July, at the NMC, Winsford, Cheshire. DMD Pathfinders and the Neuromuscular Centre are hosting NMD Fest, a two day event to link up adults with DMD and other neuromuscular conditions to learn from each other and have some fun. Find out about assistive technology solutions, sign up to our peer leaders… Read more »

NOW CLOSED: Share your attitudes towards DMD research in our new survey

DMD Pathfinders and Duchenne UK are carrying out this survey into attitudes towards DMD research among adults with the condition. This will help demonstrate to charities, pharmaceutical companies and regulators whether there is a need for adult trials, and will help us to understand what adults would like research to focus on as well as… Read more »