Help And Support For People With Rare Diseases
What is a rare disorder. A rare or orphan disease affects fewer than 200,000 people in the U.S. There are more than 6,000 rare disorders that together affect approximately 25 million Americans. Fortunately, the people with these conditions-who, with such small numbers, might slip through the cracks of standard research and funding-have someone on their side: the National Organization for Rare Disorders NORD . This organization: 8226; Provides understandable information about rare diseases; 8226; Helps connect patients and their families with support groups; 8226; Offers grants and fellowships to encourage research on rare diseases; and 8226; Helps low-income patients get the medication they need to survive. In 2005, NORD administered the distribution of approximately 130 million worth of medications and 9.8 million worth of co-pay assistance for needy patients through various patient assistance programs. The organization also awarded 14 grants and one fellowship in 2005 with a total value of 486,380 to further advance knowledge and treatment of rare diseases and how to fight them. NORD s Rare Disease Database RDB contains...