Rare Disease Day 2015
Rare Disease Day is an annual awareness day celebrated around the world dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community. This year, Rare Disease Day will take place on February 28th.
The event is organized by patient advocates who have joined with the National Organization for Rare Disorders (NORD)®, the national sponsor of Rare Disease Day in the U.S., to educate and inform the public, elected officials, legislative staff and the media.
Many important decisions related to rare diseases are made at the state level, including newborn screening; support services that help families cope with complex medical needs; an environment that promotes innovative medical research and product development; and insurance practices that assure patient access to medically-necessary therapies. The implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the health care needs of the American public are addressed.
One in 10 Americans live with a rare disease—one person on every elevator and four on every bus—affecting 30 million Americans. Two-thirds of these patients are children. According to the National Institutes of Health (NIH), there are more than 7,000 rare diseases. There are approximately 450 FDA-approved medical treatments, and many diseases are not being studied by medical researchers. Often, research gets funded by the families and friends of patients or by patient organizations.
Rare Disease Day was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe. It is now observed in more than 80 nations, and is sponsored in the U.S. by NORD.
For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us. For information about global activities, go to www.rarediseaseday.org).
