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 …
Lighter Days and Warmer Months
Lighter Days and Warmer MonthsAs we head into Spring, it is wonderful to begin to see the longer lighter days, the flowers beginning to bloom and the …
Continuing to come together
Continuing to come together2023 has already brought meaningful victories as we rally science to our support. In January we heard that NICE has …
Starting 2023 with hope
Starting 2023 with hopeI want to begin by wishing all of you a very happy new year and sharing the hope that 2023 will be a year of positive change …
