Feb 22, 2013

Rare Disease Day USA

DARKE COUNTY--On Feb. 28 over 60 countries will recognize the day as Rare Disease Day in an effort to raise the public’s awareness of this health concern.

In the United States, any disease affecting fewer than 200,000 Americans is considered rare. Statistically there are nearly 7,000 rare diseases affecting between 25 and 30 million Americans, which is nearly 1 in 10 Americans, according to the National Institutes of Health. Additionally 2/3 of the patients are infants and children and most rare diseases are serious and chronic.

The National Organization for Rare Disorders (NORD), the US Sponsor of Rare Disease Day, has been joined by over 800 partnering organizations, companies, professional societies, government agencies and individuals, personifying NORD’s epigram “Alone we are rare. Together we are strong.”

More needs to be done at the local level and everyone is encouraged to get involved by letting your congressional representatives know of the difficulty in obtaining a timely accurate diagnosis, limited treatment options, lack of research, difficulty in finding medical experts, a sense of isolation, insurance limitations and other issues affecting access to treatments. You may visit www.rarediseaseday.us for more information and awareness toolkits.

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