Join Action Duchenne for Rare Disease Day 2026
Rare Disease Day is held every year on the last day in February (every 4 years it’s held on 29th February, the rarest day in the calendar). Rare Disease Day is a global movement which aims to raise awareness for the 300 million people worldwide who live with a rare disease, along with their families and carers. The long term goal is to ensure equitable access to diagnosis, treatment, healthcare, social support and opportunities for everyone affected by a rare disease.
We want to take this opportunity to join with the international rare disease community to raise awareness, increase understanding and enhance support for the children, young people and families living with Duchenne.
How Can You Get Involved?
There are lots of ways for you to get involved with Rare Disease Day 2026!
1. Share our posts on social media: we will be sharing lots of information leading up to 28th of February. Help us raise awareness by sharing our posts with your network.
2. Share your colours: we are asking schools to get involved with our awareness and fundraising efforts using a Rare Disease Day slogan: “Share Your Colours”. We’ve love you to take part by holding a non-uniform day in your school or workplace during the week before Rare Disease Day, asking pupils and staff to wear their brightest colours to show their support. Get in touch with us to sign up or to find out more!
3. Share your story: stories from our community are one of the most powerful ways to raise awareness. If you’d like to tell people what it’s REALLY like to live with a rare condition, get in touch with our Communications Officer.
Become a Friend of Action Duchenne today to make sure that we can be there for EVERY family EVERY time.
