Meet the Team: Duchenne UK

Duchenne UK is a medical research charity founded in 2012 by Emily Reuben OBE and Alex Johnson OBE following both of their sons being diagnosed with Duchenne muscular dystrophy (DMD).

In 13 years, Duchenne UK has raised more than £27 million and used this money to:

Fund pioneering medical research into the development of transformative treatments for DMD, including clinical trials of medicines that are now showing promise for DMD.
Create the DMD Hub, a DMD clinical research network of hospital sites across the country which, since its launch in 2016, has led to more clinical trials of DMD treatments coming to the UK than ever before, giving hundreds of children living with DMD access to new treatments.
Set up DMD Care UK, a national programme establishing best practice across all the disciplines involved in DMD clinical care, to ensure healthcare professionals and parents know exactly what treatments and medical care children and adults with DMD need and can access in the NHS. As part of the DMD Care UK programme, Duchenne UK recently launched a new version of a ‘In Case of Emergency’ app for people with DMD and their families to help them share with medical staff key information about DMD and the care they need during emergencies.
Develop innovative assistive mobility technologies, such as Elevex and the Dream Chair, to support the independence of people with DMD.
Form Project 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 DMD.

Now, as part of the PaLaDIn project, Duchenne UK is working on the development of an innovative data collection platform for people with neuromuscular diseases such as DMD.

Duchenne UK’s work on PaLaDIn is being led by Dr Bouchra Ezzamouri, Head of Patient Data at Duchenne UK:

“We want to create a data platform that will help accelerate the development of new treatments and improve patient care, but also that can be used as a template for those working in other disease areas.”

For more information about Duchenne UK, click here.