The Covid-19 pandemic has had a catastrophic effect with the cancellation of thousands of events and the loss of billions in income through …
Helping you through COVID-19
Support and resources for our Duchenne community A message from the National Director, Florence Boulton With the impact of COVID-19 on our …
Virtual Bingo
We've got an easy way to run virtual bingo games as you and your friends cannot play together in person. It's free up to 30 players! Simply …
Supporting families – Lynnette’s perspective
In April 2016, 6 months after my son was diagnosed with Duchenne muscular dystrophy, I joined the Action Duchenne team. I felt I had to do something …
COVID-19: how you can help
The Covid-19 pandemic is having a huge impact on every area of our lives. Now, more than ever, our life-saving work becomes even more crucial …
Latest results from Solid gene therapy trial
Solid Biosciences have today released an update on their clinical trial of a gene therapy for Duchenne. The IGNITE DMD trial is an early …
Hundreds inspired by Duchenne Science on Tour project
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 …
