childhood

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Explore and participate in events happening around the world in honor of Rare Disease Day here!

The official Rare Disease Day 2021 video is available in 36 languages, kicking off the international patient-led movement that puts rare diseases in the spotlight. 6 continents, 6 portraits, 6 heroes, 6 lives. The official Rare Disease Day video shines a light on the global and wide community of 300 million people and over 6000 rare diseases.

What are Rare Diseases?

There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world¹, each supported by family, friends and a team of carers that make up the rare disease community.

Each rare disease may only affect a handful of people, scattered around the world, but taken together the number of people directly affected is equivalent to the population of the world’s third largest country.

Rare diseases currently affect 3.5% – 5.9% of the worldwide population.

72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 70% of those genetic rare diseases start in childhood. A disease defined as rare in Europe when it affects fewer than 1 in 2,000 people.

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CoNGO Notes: For more information on the NGO Committee for Rare Diseases, please visit ngocommitteerarediseases.org.