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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:
Comments

Michael    3/19/2012 11:17:30 AM

As an advocate for rare diseases, as well as having a rare disease myself, I would like to pass along some helpful information about an interesting company, The Rare Genomics Institute. The Rare Genomics Institute is a non-profit organization that focuses on helping patients and families with rare/orphan diseases that might benefit from genome sequencing. Rare Genomics Institute helps patients with gaining access to genome sequencing services, support, and funding. Washington University School of Medicine's Genomics and Pathology Services and the Rare Genomics Institute are planning to award grants for the sequencing of 99 exomes to rare disease advocacy groups. The grants will be free of charge to the rare diseases community! Anyone interested, should contact The Rare Genomics Institute right away. Interested applicants should submit letters of interest by April 2, 2012. If you are interested, visit the web site for this program at the Rare Genomics Institute web site by asking about the rare 99x program.

Mike Dayton

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