CHESTERFIELD, Mo. A nationwide, patient-centered health management organization, serving patients with rare, ultra-orphan disorders, is supporting the third annual Rare Disease Day, alongside a coalition of 300 patient organizations, medical societies, government agencies and companies representing the rare disease community.
Centric Health Resources said that Rare Disease Day, which takes place on Feb. 28, is sponsored by the National Organization for Rare Disorders. The event calls attention to public health issues associated with the rare diseases that affect nearly 30 million Americans. Centric is part of NORD's corporate council, which provides a platform for rare disease patient advocacy organizations and enables companies to discuss issues and trends with top orphan disease experts. NORD provides a nationwide network of online videos, patient stories and blogs; newspaper, radio, and television reports; state and municipal proclamations; a Rare Disease Hall of Fame for researchers; and other activities designed to raise awareness of what it means to have a rare disease.
“Patients with rare diseases and their families often feel isolated and forgotten,” said Craig Kephart, Centric president and CEO. “They have difficulty finding medical experts and accessing needed services. Also, with many rare diseases there are no approved treatments, and insurance may not cover treatments that are approved. Rare Disease Day shines light on these issues and builds much-needed awareness.”
In the United States, a disease is considered rare if it affects fewer than 200,000 Americans. According to the National Institutes of Health, nearly 7,000 such diseases affect nearly 30 million Americans.
“People with rare diseases remain a medically underserved population in every country,” says Peter Saltonstall, NORDpresident and CEO. “This day is intended to bring together the patients and families with rare diseases to discuss the need for greater awareness, more research, and better access to diagnosis and treatment.”