What is a rare disease?

December 12, 2023 by Lizzie Cox

Delve into the concept and significance of rare diseases and their impact.

Guest Blog: Birthday Boy

By Jack Waddington We are pleased to feature a very special guest blog for World Duchenne Awareness Day 2025. This blog has been written by Jack Waddington. Jack’s younger brother Sam lived with Duchenne after he passed away, Jack has written a memoir about growing up with him. In his own words, “it’s about the …

Guest Blog: Duchenne Parents Karen and Jamie Thompson share their experience of attending the Action Duchenne Annual International Conference

Guest Blog: Duchenne Parents Karen and Jamie Thompson share their experience of attending the Action Duchenne Annual International Conference Written by Karen and Jamie Thompson The Journey So FarWe’re a family of five, with three brilliant boys: Sam (11), Conor (10), and Dean (8). Conor and Dean are both living with Duchenne Muscular Dystrophy, and …

The Heart of Care

The Heart of Care We have had some key reminders of what we are working towards as a charity over the last few weeks. Volunteer’s Week (2nd – 8th June) was a chance to thank all of the people who give up their time and expertise for Action Duchenne. From the team of trustees, those …

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