Rare Disease Day

Celebrated on 02/28/2026

Quick Fact

Rare Disease Day is observed on the last day of February each year, making it a truly rare date that aligns with the theme of rarity. The first official Rare Disease Day was held on February 29, 2008, a leap day, symbolizing the rarity of the diseases it highlights.

Origins and Establishment of Rare Disease Day

Rare Disease Day was first launched by the European Organisation for Rare Diseases (EURORDIS) on February 29, 2008, a leap day chosen to symbolize the rarity of the diseases. The initiative aimed to raise awareness among the general public and policymakers about rare diseases and their impact on patients' lives. The day quickly gained support from patient organizations, researchers, and healthcare professionals worldwide.

Evolution and Modern Commemoration

Since its inception, Rare Disease Day has grown into a global movement, with events and campaigns organized in over 100 countries. The day is now coordinated internationally by EURORDIS and the National Organization for Rare Disorders (NORD) in the United States. Modern commemorations include social media campaigns, lighting of landmarks in rare disease colors (blue, pink, and green), patient story sharing, and advocacy meetings to push for better policies and research funding.

Facts & General Observations

• Over 300 million people worldwide live with a rare disease, which is equivalent to the population of the third-largest country.
• There are more than 7,000 identified rare diseases, with approximately 80% having a genetic origin.
• Despite the large number of affected individuals, only about 5% of rare diseases have approved treatments.

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