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
Creating a Shared Vision for Our Duchenne Community – Reflections and Thanks
Creating a Shared Vision for Our Duchenne Community - Reflections and Thanks Wow, what an amazing two days we have had together at our Annual …
Creating a Shared Vision for Our Duchenne Community – Reflections and ThanksRead More
The strength of our community
The strength of our community As we move towards the last few months of the year, I am so proud of the hard work that is coming to fruition. When …
My experience as a mentor on the Yes, I Can Residential Weekend
My experience as a mentor on the Yes, I Can Residential Weekend A blog by Benjamin James Recently, I was asked by Action Duchenne to be a mentor …
My experience as a mentor on the Yes, I Can Residential WeekendRead More
Duchenne from the sidelines, a sibling perspective
Duchenne from the sidelines, a sibling perspective Written by Logan Kaye, Duchenne sibling Whenever you hear about a family who has been …
Supporting families with science
Supporting families with science It's already been 8 months since I joined Action Duchenne as a Science Communications Coordinator – a journey …