Help And Support For People With Rare Disease (NAPSA)—Whatis a rare dis- order? 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: Provides understandable information about rare diseases; Help and support are available Helps connect patients and their families with support for people with rare or “orphan” diseases. Offers grants and fellowships “Everyone at least knows someone with a rare disease,” says Abbey Meyers, president of NORD. “People think rare diseases aren't important, but they don’t realize how many Americans are affected.” groups; to encourage research on rare diseases; and 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 onefellow- ship 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 Data- base (RDB) contains understand- able reports written for patients and families on approximately 1,170 rare diseases, with referrals to support groups and other resources. Someof the better known rare diseases the organization helps to fight are Lou Gehrig’s disease (ALS) and severe combined immunedeficiency (also known as the “Bubble Boy”disease). Since its founding in 1983, NORDhasbeen a sourceofinformation on rare diseases and has helped patients and their families find support groups. Today, NORD distributes grants and fellowships to encourage lifesaving research on rare diseases and helps ensure that patients get the medication they need. “It’s pretty scary to be told you have something you’ve never heard of,” Meyers says. “Thefirst thing people want to do after they get a rare diagnosis is connect with others affected by the same disease. NORD runsa networking program to help people do this. Wealso refer people to organizations for their diseases.” To learn more, visit the Web site at www.rarediseases.org.
