Following the success of last year's virtual event, this year’s Action Duchenne International Conference will again take place virtually on 13 and 14 …
610km cycle across Ireland and Northern Ireland
On the 17th and 18th July, John O’Brien is cycling from Mizen Head to Malin Head. A journey of 610km. He is taking on the challenge to raise money for …
Head of Fundraising and Partnerships
Reports to:National Director Type:PermanentWorking week:21 hours per week / 3 day per week Monday to Friday (days to be agreed)Hours:9am to …
We spend 88.7p in every £1 on research, support & education
Thank you to each and every one of our supporters for your continued dedication to our aims and objectives. It's important for us to keep you …
We spend 88.7p in every £1 on research, support & educationRead More
Action Duchenne receives peer-to-peer support grant
The hundreds of children, young people and adults living with Duchenne muscular dystrophy (DMD) in the United Kingdom and their families face many …
Action Duchenne receives peer-to-peer support grantRead More
Shining a spotlight on Gavin McAteer
The Challenge Gavin McAteer, with the aid of his two man support team, will run the entire length of Ireland solo, starting in Mizen, the most …
Action Duchenne’s chance to win £1,000
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is …
Launching new ‘Music & Me’ podcast
Our new podcast, 'Music & Me' is an interview series featuring talented musicians from across all genres. Broadcaster and proud Ambassador, Jonny …
National Volunteers Week – a time to say ‘thank you’
This is a special week to celebrate and say a huge heartfelt thank you to all of our fabulous compassionate volunteers who give some much of their …
National Volunteers Week – a time to say ‘thank you’Read More
Action Duchenne receives funding for ground-breaking transition project
We are delighted to share the news with our community that the award-winning Demelza Children's Hospice have chosen us as their partners to deliver an …
Action Duchenne receives funding for ground-breaking transition projectRead More
Q&A on the Managed Access Agreement (MAA) for Translarna/ataluren in England
Translarna/ataluren is used to treat Duchenne muscular dystrophy that is caused by nonsense mutations. Translarna is currently accessed in England …
Q&A on the Managed Access Agreement (MAA) for Translarna/ataluren in EnglandRead More
Update on Translarna NHS treatment for Duchenne muscular dystrophy
NICE has today announced that the Managed Access Agreement (MAA) for the drug Translarna has been extended until January 2023. The extension means …
Update on Translarna NHS treatment for Duchenne muscular dystrophyRead More
