"Far too often, individuals with rare diseases are left to fight for themselves while suffering through multiple misdiagnoses or a lack of effective treatments," stated Carole Tomko, President and General Manager of Discovery Health. "Discovery Health is proud to join NORD in its efforts to generate awareness of these orphan conditions and raise the quality of life for the patients affected by them."
This year represents the second Rare Disease Day worldwide, with the U.S., Canada, Australia, and China joining the nations of the European Union in observing the event in 2009. Overall, approximately 180 patient organizations, medical societies, companies developing orphan products, and others, have joined NORD as Rare Disease Day partners. For more information, visit NORD's Web site at rarediseases.org.
Established in 1983, NORD is a nonprofit organization which represents the interests of all patients and families whose lives have been impacted by rare diseases. A rare disease is defined as one that affects fewer than 200,000 people in the United States. According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases, affecting nearly 30 million Americans. NORD provides research grants and fellowships, educational services for patients, the public and medical professionals, and patient assistance programs. NORD provides advocacy in Washington DC on behalf of the rare disease community.
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