Rare Disease Day 2016 – 2/29/16
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The first official Rare Disease Day was in 2008 on the “rarest day of the year,” February 29th. EURODIS was responsible for the first Rare Disease Day which yielded the participation for 18 countries. In 2009, NORD (National Organization of Rare Diseases) joined forces with EURODIS to ensure Rare Disease Day became a global initiative to raise awareness of the importance of Rare Diseases.
In 2014, 84 countries participated in Rare Disease Day. It is by far the largest patient driven rare disease campaign in existence and falls either on February 28th or, if it’s a leap year, February 29th.
The International WAGR Syndrome Association continues to grow its participation in Rare Disease Day. We’ve had members who have participated in countries all over the world by posting pictures to raise awareness, partaking in state events in their respective states of residence, being the driving force behind state and country recognition of the Rare Disease Day, and promoting Rare Disease Day through social media.
Rare Disease Day 2016 is sure to be an exciting one as it falls on a leap year, so it will be on the 29th of February, the rarest day of the year. Rare For more information on Rare Disease Day, you may visit http://www.rarediseaseday.org
As NORD and EURODIS continue to release promotional materials for Rare Disease Day, we will bring you updated news and information. But the first step in celebrating Rare Disease Day is to identify how rare disease has impacted your life in a personal way. You can share YOUR story at the Rare Disease Day website. If you would like a little guidance in sharing your story, download the Telling Your Story PDF.
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