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NORD Rare Disease Day 2012

Event Date: 02/29/2012
Event Time: All Day

Event Location:
Global


The SADS Foundation is proud to join the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29 to focus attention on the needs of patients and families affected by rare diseases.


In the U.S., any disease affecting fewer than 200,000 Americans is considered rare.  According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases affecting nearly 30 million Americans.

Studies have shown that it often takes five years or longer to get an accurate diagnosis of a rare disease.  In addition, only about 200 of the diseases classified as rare have approved treatments.

Rare Disease Day started in Europe in 2008.  It was launched by EURORDIS (Rare Diseases Europe).  Last year, it was observed in more than 60 countries, with a national sponsor in each country.  NORD is the sponsor in the U.S.

More than 500 patient organizations, government entities, research institutions, and companies developing treatments have signed up as Rare Disease Day Partners on the national website hosted by NORD (www.rarediseaseday.us).  The SADS Foundation is one of those partners.