Rare Diseases Focus of CT-Based National Organization

Statistics from the Danbury-based National Organization for Rare Diseases (NORD) indicate that 30 million Americans - nearly 1 in 10 people - are diagnosed with one of about 7,000 rare diseases.  It has been estimated that approximately 357,000 people in Connecticut are facing rare diseases. Consider their families, friends, neighbors and co-workers, and the number of people impacted grows considerably.  It has been further estimated that approximately 80 percent of rare diseases are genetic in origin, which translates to about 285,600 people in Connecticut. NORD is a federation of voluntary health organizations committed to the identification, treatment and cure of rare diseases through education, advocacy and research, with national headquarters in Danbury and offices in Washington D.C.  Only about 200 of the rare diseases have treatments currently approved by the U.S. Food and Drug Administration, which leaves a vague and often lengthy path to treatment and insurance coverage.  That's where NORD steps up to help patients and their families.