Rare Disease Day (RDD) 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.
29 February 2020 will be the thirteenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities. (Find your local event among 395 events in 106 countries and join in.) Building awareness of rare diseases is important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
The first Rare Disease Day was celebrated in 2008 on 29 February, a 'rare' date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a 'rare' number of days.
What is a Rare Disease?
A rare disease, also referred to as an orphan disease, is any disorder that affects a small percentage of the population. Although the disease may be rare, patients and families share a common struggle. There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world, 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.
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- Genetic and Rare Diseases (GARD) Information Center National Institutes of Health (NIH)
- Genetics Home Reference: Your Guide to Understanding Genetic Conditions from the U.S. National Library of Medicine of the National Institutes of Health (NIH)
- Genetic Disorders