The last day of February is observed in more than 90 countries worldwide as Rare Disease Day to promote better understanding of the more than 7,000 diseases classified as rare. In the US, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. The National Institutes of Health (NIH) lists all known rare diseases on its website.
As the national sponsor of Rare Disease Day in the US, NORD is working with other national alliances around the world to plan a global theme and educational outreach each year. This year’s theme is Research. Events will focus on the importance of research and the need for expanded research on rare diseases.
On the national Rare Disease Day website , which is hosted by NORD, a state-by-state listing of planned events makes it easy to find out what is happening in your state and/or to promote awareness of events you are planning. Many teaching hospitals and academic centers host special programs or lobby tabling events on or around Rare Disease Day.
If you are interested in organizing a program, tabling event, or literature display at your institution, you can download resources from NORD’s Rare Disease Day US website. NORD also can provide speakers for Rare Disease Day (or other) educational events through its Patient/Caregiver Speakers Bureau .
Medical professionals and students can also show their support for Rare Disease Day by submitting a photo to NORD’s “ Handprints Across America ” campaign, which will be displayed on the Rare Disease Day US website. Questions related to Rare Disease Day events or requests for speakers or other resources may be directed to education@rarediseases.org.