As we approach the festive season and the end of 2024, I have been reflecting on a year filled with triumphs and challenges. It has been a time of …
Educating, Connecting, Wellbeing at the Action Duchenne Annual International Conference 2024
Action Duchenne Annual International Conference 2024 was an unforgettable gathering of patients, families, experts, and supporters, all brought …
Welcoming Autumn 2024
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 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 …
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 …
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 …
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 …
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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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 …
Creating a Shared Vision for Our Duchenne Community – Reflections and ThanksRead More
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 …
The power of our community
The power of our communityOur team up and down the country continue to do great job delivering the Science-on-Tour workshops; building contacts with …
Fighting for the future
Fighting for the futureWhile we continue our much needed day to day work supporting our families, I want to share with you the recent developments …
