Hear From Our Community

Help Develop Nutrition Information Resources for Duchenne Muscular Dystrophy

11 October 2024 by John Marrin

If you are a caregiver of/or a young person aged 7-25 with Duchenne, researchers from the University of Glasgow, and Edge Hill University, need your …

Help Develop Nutrition Information Resources for Duchenne Muscular DystrophyRead More

Welcoming Autumn 2024

29 September 2024 by Lizzie Cox

As we transition from the warmth of summer to the crisp embrace of autumn, it’s a moment to reflect on our progress and the importance of community …

Welcoming Autumn 2024Read More

Help Improve Understanding of Nutrition and Weight Management in DMD

28 August 2024 by John Marrin

Do you have 15 minutes and want to help improve our scientific understanding of the influence of nutrition and weight management in Duchenne muscular …

Help Improve Understanding of Nutrition and Weight Management in DMDRead More

Welcoming Summer

12 July 2024 by Florence Boulton

Welcoming Summer It feels as though we have waited a while for warmer days this year and it is hard to believe that we are already over half way …

Welcoming SummerRead More

Fundraising Story – The Glasgow Kiltwalk for Action Duchenne

27 June 2024 by Lizzie Cox

The Glasgow Kiltwalk for Action Duchenne Written by Sarah Kelly Last month my partner Paul and I took part in the Glasgow Kiltwalk to raise …

Fundraising Story – The Glasgow Kiltwalk for Action DuchenneRead More

Science on Tour 2024 – Oxford

21 June 2024 by John Marrin

On Tuesday the 11th of June, the team at Action Duchenne launched the first in our series of Science on Tour for 2024, kicking off our tour at the …

Science on Tour 2024 – OxfordRead More

Carrying Duchenne – A sisters view

6 June 2024 by Victoria Edwards

By Sarah Kelly Medical conditions can be isolating for a family, particularly rare ones. Our lives changed when my little brother Jonathan was …

Carrying Duchenne – A sisters viewRead More

Sunshine and Support

10 May 2024 by Florence Boulton

As the sunshine begins to make a welcome appearance, I hope you have all had a wonderful May bank holiday and are looking forward to time together …

Sunshine and SupportRead More

Givinostat & Epigenetics – An Overview

10 May 2024 by John Marrin

This week we saw the NICE scoping consultation take place for a potential new treatment for Duchenne muscular dystrophy, Givinostat. We want to …

Givinostat & Epigenetics – An OverviewRead More

Navigating the ups and downs together

29 March 2024 by Lizzie Cox

Navigating the ups and downs together I am writing to you just following the news that NICE have published their decision not to recommend …

Navigating the ups and downs togetherRead More

Taking Control

11 March 2024 by Lizzie Cox

Taking Control Action Duchenne's Transition Projects for young people living with Duchenne. Yes I Can “Our Yes I Can transition project has …

Taking ControlRead More

Hope and Determination on Rare Disease Day 2024

29 February 2024 by Florence Boulton

Hope and Determination on Rare Disease Day 2024 Today, 29th February 2024, marks Rare Disease Day. At Action Duchenne, we join with the global rare …

Hope and Determination on Rare Disease Day 2024Read More

Footer

Subscribe to our mailing list