Rare Diseases and Rare Disease Day
You may not have heard of any rare diseases in everyday conversations because they are *rare*.
Rare Diseases
What is a Rare Disease?
In the United States, a rare disease is any disease that affects fewer than 200,000 people and many of which have no treatment.
7 Fast Facts about Rare Diseases
In the United States, 1 in 10 people has a rare disease.
In Europe, 1 in 2,000 people is affected by a rare disease.
There are about 7,000 known rare diseases.
50% of rare disease havers are children.
80% of people affected by a rare disease are attributed to only 350 of the 7,000 rare diseases.
Rare diseases are responsible for 35% of deaths in the first year of life.
Rare Disease Day, the awareness holiday for rare diseases, is held on the rarest day of the year – February 29.
Rare Disease Day
What is Rare Disease Day?
Rare Disease Day is an awareness holiday about rare diseases and their impact on patients’ lives on the last day of February, the rarest day of the year.
Inaugural Rare Disease Day in 2008
Rare Disease Day was first launched in 2008 on February 29 – aka the calendar year's rarest day. It was created by EURORDIS, an alliance of rare disease patient organizations in Europe, to have a global awareness campaign for rare diseases, starting with 18 countries in Europe participating. Since then, EURODIS continues to coordinate the international campaign for Rare Disease Day.
Rare Disease Day As The Years Went On
As Rare Disease Day continued in the years to come, more countries around the world outside of Europe would participate from 18 countries in its first year to over 60 countries in its 5th year to over 90 countries in its 10th year. Each year, the holiday has had different themes starting with awareness in the early years to patient advocacy. As more and more countries started to participate, the awareness holiday focused on research and community building in recent years.
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