Navigating the ups and downs together I am writing to you just following the news that NICE have published their decision not to recommend …
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 …
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 Thanks Wow, 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 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 …
The power of our community
The power of our community Our team up and down the country continue to do great job delivering the Science-on-Tour workshops; building contacts …
Fighting for the future
Fighting for the future While 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 Months As we head into Spring, it is wonderful to begin to see the longer lighter days, the flowers beginning to bloom and …
Continuing to come together
Continuing to come together 2023 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 hope I 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 …
Reflection and celebration
A blog by Florence, National Director As we move toward the end of 2022, I’ve been looking back on the year we've had and reflecting on both the …
International Conference and Community
International Conference and Community Blog by Florence, National Director Hello everyone! I am glad to be back sharing with you my updates …