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Help Improve Understanding of Nutrition and Weight Management in DMD

August 28, 2024 by John Marrin

Do you have 15 minutes and want to help improve our scientific understanding of the influence of nutrition and weight management in Duchenne muscular …

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Welcoming Summer

July 12, 2024 by Florence Boulton

Welcoming Summer It 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 …

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Fundraising Story – The Glasgow Kiltwalk for Action Duchenne

June 27, 2024 by Lizzie Cox

The Glasgow Kiltwalk for Action Duchenne Written by Sarah Kelly Last month my partner Paul and I took part in the Glasgow Kiltwalk to raise …

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Science on Tour 2024 – Oxford

June 21, 2024 by John Marrin

On Tuesday the 11th of June, the team at Action Duchenne launched the first in our series of Science on Tour for 2024, kicking off our tour at the …

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Carrying Duchenne – A sisters view

June 6, 2024 by Victoria Edwards

By Sarah Kelly Medical conditions can be isolating for a family, particularly rare ones. Our lives changed when my little brother Jonathan was …

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Sunshine and Support

May 10, 2024 by Florence Boulton

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 …

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Givinostat & Epigenetics – An Overview

May 10, 2024 by John Marrin

This week we saw the NICE scoping consultation take place for a potential new treatment for Duchenne muscular dystrophy, Givinostat. We want to …

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Navigating the ups and downs together

March 29, 2024 by Lizzie Cox

Navigating the ups and downs together I am writing to you just following the news that NICE have published their decision not to recommend …

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Taking Control

March 11, 2024 by Lizzie Cox

Taking Control Action Duchenne's Transition Projects for young people living with Duchenne. Yes I Can “Our Yes I Can transition project has …

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Hope and Determination on Rare Disease Day 2024

February 29, 2024 by Florence Boulton

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 …

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Vamorolone and Corticosteroids – An Overview

February 1, 2024 by John Marrin

What are corticosteroids? Corticosteroids are a class of steroid hormones that includes glucocorticoids and mineralocorticoids. However, the term …

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Finding Purpose and Hope – A Sibling’s Story

January 24, 2024 by Lizzie Cox

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 …

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