Duchenne UK funds research to further understand the benefits of dietary supplements as treatments for Duchenne Muscular Dystrophy.

Duchenne UK are funding £179,520 in to research at the University of Reading to understand the benefits of nutraceuticals.Read more

Patient and Caregiver perspectives on Duchenne Clinical Trials Survey Report

In the summer of 2017, Duchenne UK launched its first patient survey, to better understand patient views on accessing clinical trials and research. The results have been analysed and Sejal Thakrar presents these in a video and a report.Read more

Sarepta Eteplirsen (Exondys 51) Managed Access Program Community Update

Sarepta has made some modifications to the program to allow access to the drug for those who took part in the eteplirsen clinical trials for studies such as study 28, study 33 or the Promovi study. Contact your neuromuscular doctor to apply.Read more

House of Lords Science and Technology Committee inquiry: The impact of Brexit on UK Duchenne muscular dystrophy research

Duchenne UK has submitted evidence to the House of Lords Science and Technology Committee inquiry into Life Sciences and the Industrial Strategy.Read more

Muscle Biopsy Survey

Duchenne UK understands that very little data had been collected on the patient perspective on muscle biopsies. To address this the muscle biopsy working group have devised this survey to better understand your views and look at how we can improve patient and caregiver experience when carrying out muscle biopsies in clinical trials.Read more

Deutsche Bank Charity of the Year: Vote for Duchenne UK!

Duchenne UK has been shortlisted as one of the final six charities, two of which will become Deutsche Bank Charities of the Year. This is decided by an EMPLOYEE VOTE, so we need your help to reach as many people at Deutsche Bank as possible!Read more

Duchenne UK launches the DMD HUB

The Hub is a network of trial sites - and staff - trained and funded to carry out clinical trials for Duchenne Muscular Dystrophy. The Hub’s aim, is to make more clinical sites trial ready by providing training, mentoring and resources to help them run clinical trials.Read more

First Patients Enrolled in UK’s Early Access to Medicines Scheme for Santhera’s Raxone® in Duchenne Muscular Dystrophy (DMD)

Duchenne UK is pleased to share an update from Santhera that first DMD patients have been enrolled to the UK’s EAMS for Raxone®.Read more

Submit your personal stories about Ataluren/Translarna and help our friends in the USA

UK families who have participated in the trial and/or are currently receiving Ataluren/Translarna are asked if they would like the opportunity to submit their personal experiences to the FDA in the United States.Read more

Duchenne UK responds to the Life Sciences Industrial Strategy

The Government has today, Wednesday 30 August, published the ‘Life Sciences Industrial Strategy’. The strategy sets out how the UK can exploit and rapidly grow its life sciences industry over the next decade.Read more

Duchenne UK hosts first Patient Information Day

We invited patients and caregivers to a free information day at Alder Hey Children's Hospital, to share with them some of the trials we've funded, update them on the work we are doing, and to give advice and information about how to access research and clinical trials for DMD.Read more