What is Rare Disease Day?

What is Rare Disease Day?

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 28 February (or 29 in leap years)—the rarest day of the year.

Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.

To find out more, visit the Rare Disease Day website here: https://www.rarediseaseday.org/what-is-rare-disease-day/

SOFT UK and Genetic Alliance Podcast:

To celebrate and support Rare Disease Day, we spoke to Sophie Peet from Genetic Alliance to hear more about what their charity does and about the Rare Disease day, celebrated on the last day of February. Listen to this conversation as she explains this year's theme and what they hope to achieve in 2023.

You can listen to the podcast here: