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
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 Kelly Medical 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 together I am writing to you just following the news that NICE have published their decision not to recommend …
Taking Control
Taking Control Action Duchenne's Transition Projects for young people living with Duchenne. Yes I Can “Our Yes I Can transition project has …
Hope and Determination on Rare Disease Day 2024
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 …
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 Maestre I am Pilar, currently 22 years old, and I have lived most of my life in Spain, where I was born. Recently, I volunteered …
Resilience, care and transformation – end of year reflections from our CEO
Resilience, care and transformation - end of year reflections from our CEO As we head towards the bustle and business of the festive season, I am …
Resilience, care and transformation – end of year reflections from our CEO Read More
Advocacy and Campaigns: using our experience, voice and resources to make change happen
Advocacy and Campaigns: using our experience, voice and resources to make change happen Written by Kathy Wedell We are pleased to introduce …
Advocacy and Campaigns: using our experience, voice and resources to make change happenRead More
