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U.S. Department of Health and Human Services

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Rare Diseases Take Spotlight in Annual Event

Organizations around the world are observing February 29, 2012, as the fifth annual Rare Disease Day. The Food and Drug Administration (FDA) supports Rare Disease Day and the global effort to raise awareness about rare diseases, the importance of research to develop diagnostics and treatments, and the challenges faced by patients with rare diseases and their families on a daily basis.

Held on the last day of February—Feb. 29 in leap years and Feb. 28 in other years—Rare Disease Day 2012 will focus on solidarity and the need for collaboration as well as mutual support in the field of rare diseases, with the theme being “Rare but strong together”.

Rare disease is defined differently around the globe. About 7,000 known rare diseases have been identified around the world. In the United States, a disease is rare if it affects fewer than 200,000 people. About 30 million Americans are afflicted with rare diseases. Each disease has unique problems and may have little or no support or treatment.  It is estimated that about 80 percent of rare diseases are genetic, and about half of all rare diseases affect children. When the Orphan Drug Act (ODA) of 1983 was signed into law, no one could have imagined then that it would become one of the most important pieces of health care legislation today. More than 390 orphan products for treatment of rare diseases have been approved by FDA since this groundbreaking legislation went into effect.

 

NIH 2012  Rare Disease Day logo

NIH Rare Disease Day:

On February 29, 2012, FDA will join the National Institutes of Health (NIH) to celebrate the fifth International Rare Disease Day with a day-long program to highlight the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers, the National Organization for Rare Disorders (NORD), and the Genetic Alliance. Rare Disease Day at NIH will be held in the Masur Auditorium from 8:30 am to 5:00 pm.

Information and registration

 

 

                                                                                           FDA Rare Disease Patient Advocacy Day:

FDA Rare Disease Patient Advocacy Day logo

On March 01, 2012, the FDA will celebrate the fifth annual Rare Disease Day by hosting a "FDA Rare Disease Patient Advocacy Day" to engage and educate the rare disease community on regulatory processes related to rare diseases. This educational meeting will consist of live and interactive simultaneous webcast of presentations provided by FDA experts from various Centers and Offices, as well as from outside experts. The FDA Rare Disease Patient Advocacy Day is also supported by the NIH, NORD, and the Genetic Alliance. The meeting will be held at FDA White Oak Campus, 10903 New Hampshire Ave., Bldg. 31, Room 1503, Silver Spring, MD 20993 from 8:30 am to 5:00 pm.

 

Information and registration 

 

 

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For more information on Rare Disease Day: Rare Disease Day