Open Letter from the Chair and CEO of Action Duchenne for Rare Disease Day 2025

Dear Friends, Supporters, and Advocates,

On Rare Disease Day 2025, we stand together to raise awareness, celebrate our community, and drive meaningful change for everyone affected by Duchenne muscular dystrophy. This year’s theme, “More than you can imagine,” reflects the incredible strength, resilience, and achievements of those living with Duchenne – qualities that inspire everything we do at Action Duchenne.

We know that Duchenne is more than a diagnosis. It is the lived experience of thousands of young people and families navigating daily challenges with determination and hope. But our community is also more than the barriers they face – they are innovators, creators, advocates, and change-makers. We see this in the Yes I Can projects, where young people are composing music and designing game characters that bring their creativity to life. We see it in the families who tirelessly push for better access to research, treatments, and care. And we see it in you – our supporters – who make progress possible.

At Action Duchenne, we are committed to funding scientific research and education projects, providing dedicated frontline support and resources to families, and campaigning for access to treatments. This Rare Disease Day, we ask you to stand with us in raising awareness, breaking down barriers, and shaping a future where everyone affected by Duchenne can thrive.

Here’s how you can make an impact today:

• Amplify our message – Share our campaign on social media to highlight the voices of those living with Duchenne.
• Join our movement – Become a member of Action Duchenne and support our mission for better treatments, care, and support.
• Get involved – Register for our upcoming Webinar Series 2025.

Most importantly, let’s take this day to celebrate the extraordinary individuals and families who remind us that they are more than their diagnosis, more than the challenges they face, and more than we can ever imagine.

Thank you for your support, your passion, and your belief in a better future.

Together, we are stronger.

With gratitude,

Vicky Pleydell, Chair, Action Duchenne

Florence Boulton, CEO, Action Duchenne