Rare Disease Day is the official international awareness-raising campaign for rare diseases and takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day was launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008. We are proud to be members of Eurordis.

There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases Eurordis works towards more equitable access to diagnosis, treatment, care and social opportunity. Our key message for Rare Disease Day 2020 is that:

  • Rare is many worldwide
  • Rare is strong every day
  • Rare is proud everywhere

You can help by using key rare diseases statistics to share the message that rare is many to the media.

  • 300 million people living with a rare disease worldwide
  • Over 6000 different rare diseases
  • 72% of rare diseases are genetic
  • 70% of those genetic rare diseases start in childhood

#RareDiseaseDay is the unique campaign hashtag for Rare Disease Day, be sure to use it your social media posts in help build momentum around the global campaign!

Raise awareness about rare diseases and their impact on peoples’ lives by sharing your story of living with a rare disease or caring for someone that does. You can submit a written or video testimony on the Rare Disease Day website and read the stories already uploaded.