Rare Disease Day 2025 – More than you can imagine
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
Rare Disease Day is observed every year on 28th February (or 29th in leap years)—the rarest day of the year.
Duchenne muscular dystrophy is a rare disease, and we want to join with the global rare disease community on February 28th.
What can YOU do?
The theme for Rare Disease Day 2025 is “More than you can imagine; an anthology of rare experiences”. We would love to share your experiences of living with a rare disease, as a parent/carer, family member, friend or as someone living with Duchenne. You can share your experience in any way you’d like to – writing a blog post or a song, recording a video, taking a photo or painting a picture. We want to collect as many contributions as possible in the lead up to Rare Disease Day 2025, so that your voices are heard as part of this important awareness day.
If you’d like to contribute, please email lizzie@actionduchenne.org
Share your colours: get your school or workplace involved?
We’d love to get everyone involved in creating awareness for Rare Disease Day. Here are some ways you could get involved:
- Share your colours and fundraise for us: on February 28th, have a non-uniform day at your school or workplace, or a day where everyone has to wear their brightest colours to celebrate the rare in us all. Ask for a donation to participate so it’s an easy way to fundraise AND create awareness.
- Use the Rare Disease Day school toolkit in an assembly or lessons on February 28th to explain rare diseases to children and young people.
- In an effort of global solidarity, you are invited to light or decorate your home with the Rare Disease Day colours at 7 PM your local time on 28 February 2025. You can use garlands, social media filters, candles, disco lamps, colourful decorations… Let your creativity shine Take a picture of yourself with the illuminations or decorations you chose and publish it on your social media using our “Global Chain of Light” filters and #rarediseaseday.
