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Rare Disease Day | 29 February 2020

February 29, 2020

Observed every year on the last day of February, Rare Disease Day seeks to raise awareness among the general public, as well as policymakers, public authorities, industry representatives, scientists, and health professionals about the more than 7,000 rare disorders that affect as many as 400 million people worldwide (greater than the population of the U.S.!).

This year, the campaign’s key message is:

“Rare is many worldwide, rare is strong every day, and rare is proud everywhere.”

Thousands of events are expected to take place in over 100 countries around the world with thousands of patients, caregivers, and advocates across the world to sport denim ribbons and zebra stripes, paint their faces, contact lawmakers, participate in academic and community discussions, and hold fundraisers as part of the Rare Disease Day activities.

What is a Rare Disease?

A disease is defined as rare in the United States when it affects fewer than 200,000 residents at any given time. The criteria in Europe is fewer than one in 2,000.

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.

More facts and statistics on Rare Diseases are available here:

Rare Facts

Rare Disease Day History & Goals:

Rare Disease Day began in 2008, and is coordinated internationally by Eurordis-Rare Diseases Europe, a patient-driven alliance of nearly 900 patient organizations in 72 countries, and 60 national alliances of rare disease organization partners. The effort that started as a European event has grown steadily to 104 countries; the U.S. joined in 2009.

The long-term goal of Rare Disease Day over the next decade is increased equity for patients and their families as it concerns diagnosis, treatment, care, and social opportunities. Rare diseases range from cystic fibrosispulmonary hypertensionscleroderma, and sickle cell — to Angelman syndromeBatten and Gaucher diseases, epidermolysis bullosafragile X syndrome, and spinal muscular atrophy, among many others.

Learn about the ways you can participate in #RareDiseaseDay 2020 here:

Get Involved

Download the #RareDiseaseDay 2020 Promotional Material here:

RDD Material



February 29, 2020
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