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What it means to be rare

Did you know?

  • 300 million people are living with a rare disease worldwide
  • Over 6,000 different rare diseases
  • 72% of rare diseases are genetic
  • 70% of those genetic rare diseases start in childhood

Rare Disease Day occurs on the 29th February.

It is a special day dedicated to raising awareness to those living with a rare disease and to work towards more equitable access to diagnosis, treatment, care and social opportunity.

The key message for Rare Disease Day 2020 is that:

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

Created by EURORDIS and its Council of National Alliances, the very first Rare Disease Day took place in 2008 with events in 18 participating countries. EURORDIS continues to coordinate the international campaign together with a worldwide patient community. The number of participating countries has increased year on year, with thousands of events taking place on all continents for on or around the month of February. In total, events have taken place in over 100 countries since 2008!

For more information you can visit the dedicated website: