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
Welcoming SummerIt 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 …
Fundraising Story – The Glasgow Kiltwalk for Action Duchenne
The Glasgow Kiltwalk for Action DuchenneWritten by Sarah KellyLast month my partner Paul and I took part in the Glasgow Kiltwalk to raise money for …
Fundraising Story – The Glasgow Kiltwalk for Action DuchenneRead More
Science on Tour 2024 – Oxford
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 …
Carrying Duchenne – A sisters view
By Sarah KellyMedical conditions can be isolating for a family, particularly rare ones. Our lives changed when my little brother Jonathan was …
Sunshine and Support
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 …
Givinostat & Epigenetics – An Overview
This week we saw the NICE scoping consultation take place for a potential new treatment for Duchenne muscular dystrophy, Givinostat. We want to …
Navigating the ups and downs together
Navigating the ups and downs togetherI am writing to you just following the news that NICE have published their decision not to recommend Vamorolone …
Taking Control
Taking ControlAction Duchenne's Transition Projects for young people living with Duchenne. Yes I Can“Our Yes I Can transition project has had a …
Hope and Determination on Rare Disease Day 2024
Hope and Determination on Rare Disease Day 2024Today, 29th February 2024, marks Rare Disease Day. At Action Duchenne, we join with the global rare …
Vamorolone and Corticosteroids – An Overview
What are corticosteroids?Corticosteroids are a class of steroid hormones that includes glucocorticoids and mineralocorticoids. However, the term …
Finding Purpose and Hope – A Sibling’s Story
Written by Pilar MaestreI am Pilar, currently 22 years old, and I have lived most of my life in Spain, where I was born. Recently, I volunteered for …
