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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.

Please note that if you would like to write letters for different situations to the 7 listed above then that’s totally ok! We want you to have fun with this initiative and maybe you’ve thought of a situation more fitting for a patient to open a letter.

To register as a sender OR as a recipient for this initiative please complete the form above. 


For any queries, please contact Missy at

Prefer to donate?

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