Rare diseases are roughly defined as conditions affecting fewer than 200,000 people in the United States. Although a relatively small number of people are diagnosed with each individual disorder, there are 6,000 different rare diseases. Added together, these affect 1 in 10 Americans—30 million people.
Today, February 29, is the rarest day of the year and also Rare Disease Day. Last week, we held our 3rd annual Rare Disease Symposium. Today, there are events being held all over the U.S. and the world. Here are just a few:
National Institutes of Health (NIH) is holding a day-long celebration and recognition of the various rare diseases research activities supported by the NIH.
National Organization for Rare Disorders (NORD) will be live-streaming the Rhode Island Rare Disease Foundation Awareness event taking place 6:00-8:00 p.m. ET today in Cranston, RI. NORD is also sponsoring a Handprints on the Hill campaign to encourage everyone to join us in sending an important message to President Obama, members of Congress, and other elected officials.
For more information, check out:
Pictures from Sanford-Burnham’s Rare Disease Day Symposium 2012
Keynote talk by Dr. Eric Green, director of the National Human Genome Research Institute
Video, blog posts, and more from Sanford-Burnham’s Rare Disease Day Symposium 2011
Rare disease research at Sanford-Burnham