We recognised that keeping up with research news can be challenging, with news stories and press releases using language that's much more …
Hundreds inspired by Duchenne Science on Tour projectRead More
My first month at Action Duchenne
When the National Director role at Action Duchenne came up last November and I started reading about all the work the charity does, it was inspiring …
Raising the profile of Duchenne with Primary School pupils on Rare Disease Day
Lizzie, Duchenne Mummy and one of Action Duchenne's volunteer Community Champions, was asked to go into her son’s school to give a talk about Duchenne …
Raising the profile of Duchenne with Primary School pupils on Rare Disease DayRead More
Visit to Royal Holloway
Yesterday, we were delighted to be a part of the Royal Holloway University of London's Rare Disease Day event. Neil and Helen were inspiring the …
Rare Film Festival
Last week Action Duchenne attended the inaugural Rare Film Festival, hosted by Rare Disease UK. One of the sponsoring companies, PTC Therapeutics …
Give your heart to Bertie’s ball
It was an honour to attend the 'Give Your Heart to Bertie's Ball' organised by the wonderful Tracey Keilty and Kayleigh Coulson. Their commitment …
A warm welcome message from our new National Director
I am delighted to have been appointed as National Director of Action Duchenne. It is an honour to become part of a charity so dedicated to making a …
A warm welcome message from our new National DirectorRead More
Welcome to our new National Director
We are delighted to welcome Florence Boulton to Action Duchenne as our new National Director. Florence has considerable leadership and …
Take part in quality of life research for Duchenne
Acaster Lloyd, an independent research consultancy, are carrying out research looking at the impact of Duchenne on family carers, including people's …
Advice for Emergency Care
Children with DMD experience the normal childhood illnesses and accidents. But, because their muscles are weaker, some things are more serious for …
How many people with Duchenne might be eligible to receive idebenone in England?
In May 2019 Santhera Pharmaceuticals submitted an application for a European Marketing Authorisation for Puldysa® (idebenone) for the treatment of …
How many people with Duchenne might be eligible to receive idebenone in England?Read More
Sarepta Therapeutics and Roche to partner on gene therapy
Sarepta Therapeutics and Roche have announced that they will be working in partnership to develop Sarepta’s potential gene therapy for Duchenne …
Sarepta Therapeutics and Roche to partner on gene therapyRead More
