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 …
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 …
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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 happenWritten by Kathy WedellWe are pleased to introduce Kathy …
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Creating a Shared Vision for Our Duchenne Community – Reflections and Thanks
Creating a Shared Vision for Our Duchenne Community - Reflections and ThanksWow, what an amazing two days we have had together at our Annual …
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The strength of our community
The strength of our communityAs we move towards the last few months of the year, I am so proud of the hard work that is coming to fruition. When we …
My experience as a mentor on the Yes, I Can Residential Weekend
My experience as a mentor on the Yes, I Can Residential WeekendA blog by Benjamin JamesRecently, I was asked by Action Duchenne to be a mentor for the …
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Duchenne from the sidelines, a sibling perspective
Duchenne from the sidelines, a sibling perspectiveWritten by Logan Kaye, Duchenne siblingWhenever you hear about a family who has been affected by a …
