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Posted on 25. February 2021

What Is Rare Disease Day?

By IG Living

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Rare Disease Day is the official international awareness-raising campaign for rare diseases that takes place on the last day of February each year. The main objective of the campaign is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives.

Rare Disease Day was launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008. Since Rare Disease Day was first launched, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

The campaign started as a European event and has progressively become a world phenomenon, with the U.S. joining in 2009 and participation in more than 100 countries all over the world in 2020. We hope even more will join in 2021. Some countries have decided to raise rare disease awareness further. For example, Spain declared 2013 as the National Year for Rare Diseases.

The first Rare Disease Day was celebrated in 2008 on February 29, a "rare" date that happens only once every four years. Since then, Rare Disease Day has taken place on the last day of February, a month known for having a "rare" number of days.

Raising Awareness of What It Means to Be Rare.

There are more than 300 million people worldwide living with a rare disease. Together across borders and across the 6,000-plus rare diseases, we work toward more equitable access to diagnosis, treatment, care and social opportunity. Our key message for Rare Disease Day 2021 is: Rare is many. Rare is strong. Rare is proud.

Stay up to date with the latest news from this year's Rare Disease Day campaign by following us on Facebook, Twitter and Instagram.


Comments (2) -

Linda Carlson
9:07 AM on Sunday, March 28, 2021

An explanation of Rare Disease Day without documenting which ones are considered “rare” diseases. Frustrating. Is any disease for which you take IVIG considered “rare”? Seems like they’re advocating use of IVIG for an increasing number of conditions, yet I see zero evidence that I’m being followed via Study for a needed decision that IVIG is indeed considered effective for Myasthenia yet it has kept me alive for 12 years now, but annually I have to get pre-certified before IVIG is approved for my condition. This is beyond ridiculous and indicative of our poor American system of Health and Data. When will this change???

Georgeann Massey
11:00 AM on Friday, April 23, 2021

I agree with Linda, this getting approved every year is so unbelievable frustrating and causes depression and ansity for me as anyone who has to go through this every time!

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