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rare diseases


By: Cindy | February 28 2012 | Category: NIH Resources, Tidbits for Teachers


Rare Diseases Day LogoThis year’s theme: “Rare But Strong Together”

We’ve been thinking a lot about rare diseases in the office this year, as we wrapped up production of our latest middle school curriculum supplement, Rare Diseases and Scientific Inquiry. It’ll help students explore how scientists research rare diseases and treatments and learn about the workings of the human body. It’s almost ready to ship to educators, which is amazing, since it’s time again to observe Rare Disease Day!

The first Rare Disease Day took place in Europe and Canada during our last leap year, Feb. 29, 2008. Sponsored by alliances of patient groups External Web Site Policy, it was created to raise awareness about rare diseases and improve their treatment and patients’ access to treatment. Over the next four years, dozens of countries have joined in, and last year, more than 60 countries from all over the world participated.

NIH celebrates Rare Disease Day at an all- day series of talks, posters, and exhibits on the main campus in Bethesda, MD. The focus is on research supported by NIH, the Food and Drug Administration, the National Organization of Rare Disorders, and the Genetics Alliance. You can follow the events of the day on Twitter: #NIHORDR.

Wearing your favorite pair of jeans is one way to show your support for Rare Disease Day, thanks to a campaign the Global Genes ProjectExternal Web Site Policylaunched 2009. The connection? Jeans and genes are universal – as are rare diseases. More than 7,000 rare diseases affect 30 million people in the United States alone, and about three-quarters of these are children.

To request a copy of Rare Diseases or find out more about it, visit http://science.education.nih.gov/customers.nsf/MSDiseases.htm

For more information about rare diseases, see http://rarediseases.info.nih.gov/AboutUs.aspx

For more about global campaigns to raise awareness and fund rare diseases resea rch, go to the Rare Project site: http://rareproject.org/ External Web Site Policy
For timely updates about science education, STEM, NIH research, and health and med i cal science, you can follow the NIH Office of Science Education through multiple channel s:
By: Cindy, Gloria | February 25 2011 | Category: NIH Resources, Science News, Tidbits for Teachers


It all started at my son’s wedding as I watched one of his groomsmen swaying at the altar, attempting to stay upright. As soon as the ceremony was over, we found him stretched out on a bench in the lobby. What followed was months of recovery, neurological tests, and consultations. He finally got the diagnosis: Parsonage-Turner syndrome, a rare disease of a group of nerves that runs from the spine through the neck and into the arm.

On Monday, February 28, the National Institutes of Health (NIH) will celebrate Rare Disease Day. The celebration will be on the main campus in Bethesda, Maryland. Attendance is free and open to the public. It’s one of the many ways NIH draws attention to our country’s 7,000 rare diseases. If fewer than 200,000 people in the U.S. have a disease, we consider it rare. About 80 percent of the rare diseases are genetic, and about half of them affect children.  By raising awareness about these diseases, NIH shines a bright light on these often mysterious and underdiagnosed disorders.


The NIH Offices of Science Education and Rare Diseases Research are looking forward to the summer release of a new curriculum supplement for grades 6 - 8 that explores scientific inquiry through the study of rare diseases. Stay tuned for an announcement of its release in coming months!  

For more information:

Rare Disease Day at NIH

Rare Disease Day all over the world
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