Rare Disease Day is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, 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 crucial role in building an international rare disease community – multi-disease, global, and diverse, yet united in purpose.
Rare Disease Day is observed every year on 28 February (or 29 February on a leap year – the rarest day of the year). It was established and is coordinated by EURORDIS in partnership with over 70 national alliance patient organisations. The day serves as a powerful focal point, driving advocacy efforts at local, national, and international levels.
Rare Disease Day 2026 – Equity for Rare
This year’s Rare Disease Day theme is ‘Equity For Rare’. Too often rare disease patients do not receive the care and support they so desperately need and deserve in a timely manner. Here you can read accounts from both our staff and community members about their experience.
Help us light up our Stained Glass Window!
Download and display our Social Media Banner to help spread the word!
Just click the button below, then:
- Right click and ‘Save as’ for PC
- Long press on the image and ‘Download image’ for mobile
Global Chain of Lights 2026
At 7pm local time on Rare Disease Day (28th February) people around the world will be lighting up buildings, lighting or decorating their homes (or themselves!) to spread the word in a global chain of light!
You can use garlands, social media filters, candles, disco lamps, or colourful decorations to raise awareness of leukodystrophy and the rare disease community.
Don’t forget to post on social media and tag us so we can share!
Rare Disease Days Gone By
Rare Disease Day 2025 – More Than You Can Imagine
In 2025 we asked our community to get involved with the theme ‘More Than You Can Imagine’ by sharing words which described their experience with leukodystrophy. We provided a poster which could be printed or used digitally.
Here are some of the words that came up: challenging, stressful, heartbreaking, shocking, unpredictable, cruel, lifechanging, and complicated.
Rare Disease Day 2024
For Rare Disease Day in 2024, we shared stories from our amazing community, along with facts and figures about leukodystrophy are rare disease.
