Rare Disease Day 2025

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 in leap years—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.

(Credit: Rarediseaseday.org)

‍

Find our more about Rare Disease Day and the work of Genetic Alliance (the organisers of RDD in the UK) as they launch More Than You Can Imagine: an anthology of rare experiences

See if you can spot our very own TTPNetwork member Hannah-Louise Blackall in the anthology!

Read about how Genetic Alliance are calling for a UK-wide government strategy on rare conditions here

‍

Have a great Rare Disease Day!