How to talk to children about Duchenne - the early years We know how hard it is for Duchenne parents, carers and family members to find the 'right' …
Joint MDUK and Action Duchenne webinar with NICE and Translarna survey 2022
This year the National Institute of Health and Care Excellence (NICE) is conducting its final appraisal of Translarna (also called ataluren). This …
Joint MDUK and Action Duchenne webinar with NICE and Translarna survey 2022Read More
End of project report summary – Clinical Trials Lectureship (Newcastle)
We are delighted to report the outcomes of our grant for a Clinical Trials Lectureship. The grant, which was supported by a consortium of seven UK …
End of project report summary – Clinical Trials Lectureship (Newcastle)Read More
Gene therapy trial shows ‘statistically significant’ improvements
Sarepta Therapeutics have announced the audited, quality-controlled data reflecting all results from Part 2 of their Study SRP-9001-102 (Study 102). …
Gene therapy trial shows ‘statistically significant’ improvementsRead More
Demelza and Action Duchenne collaborative project: transition to adulthood fact-finding
Action Duchenne aims to support our young people transitioning to adulthood by providing professional-led residential and online skills …
Demelza and Action Duchenne collaborative project: transition to adulthood fact-findingRead More
Action Duchenne brings Christmas magic to Duchenne families
On 17th December 2021, UK charity Action Duchenne, with support from Sporting Bears, brought light, hope and Christmas magic to 32 families living …
Action Duchenne brings Christmas magic to Duchenne familiesRead More
Fundraising total announced for GP’s epic 362 mile run
This week, Duchenne family and long-standing Action Duchenne supporters, the O'Doherty's of Derry, Ireland announced they have raised an incredible …
Fundraising total announced for GP’s epic 362 mile runRead More
Farewell 2021, welcome 2022
A message from our National Director, Florence Boulton Another year has flown by! A very Happy New Year to all my colleagues, partners, families …
Long-standing Trustee launches charity album
ACTION Duchenne’s longest-serving Trustee, Mark Silverman, has today launched his lock-down inspired album ‘Markin’ Time’. Taking vocals for …
Charity album coming soon
We are so excited to announce the launch of Markin' Time, Mark Silverman's debut solo album! In 2020 during the first lockdown, our Trustee Mark …
Innovative and sustainable FAIR solution for Duchenne Data Platform
Duchenne Parent Project in the Netherlands announced that their patient-led online registry (The Duchenne Data Platform) has successfully …
Innovative and sustainable FAIR solution for Duchenne Data PlatformRead More
Book giveaway for newly diagnosed families
Thanks to the amazing Gemma Kier, author of The Abilities in Me Children's Book Series, we are delighted to be able to send this amazing book out to …
