Millions Around World to Observe Rare Disease Day on Monday
WASHINGTON, Feb. 22, 2011 /PRNewswire-USNewswire/ — A coalition of more than 500 U.S. patient organizations, medical societies, government agencies, and companies will join the National Organization for Rare Disorders (NORD) in observing Rare Disease Day on Monday, Feb. 28. At the same time, corresponding groups around the globe will be doing the same thing.
“People with rare diseases remain a medically underserved population,” said NORD President and CEO Peter L. Saltonstall. “Studies have shown that it often takes several years to get a diagnosis. Little or no research is being done on many rare diseases. And, even when there is a treatment, patients often have difficulty accessing it because of reimbursement or other issues.”
For those reasons, he said, patient organizations around the world are uniting to support an annual day to focus attention on rare diseases as a public health issue.
In the U.S., any disease affecting fewer than 200,000 Americans is considered rare. Only about 200 of the known 6,800 rare diseases have treatments. Many patients are treated “off-label,” with products not developed specifically for their disease. Increasingly, in today’s economic climate, insurers refuse to pay for off-label treatments.
NORD provides advocacy and education on behalf of all patients and families affected by rare diseases. Its message year-round, and especially on Rare Disease Day, is that people with rare diseases need earlier diagnosis, more research, and access to treatments.
A Global Observance
Rare Disease Day started in Europe in 2008, sponsored by NORD’s partner organization, the European Organization for Rare Diseases (EURORDIS). The following year, EURORDIS asked NORD to sponsor the observance in the U.S. On the national Rare Disease Day website hosted by NORD (www.rarediseaseday.us), more than 500 patient organizations, medical societies, and companies have signed on as Rare Disease Day Partners in support of the day. These partners display the logo on their websites and sponsor events and activities to focus attention on rare diseases.
Awareness of the day has been growing. This year, the U.S. Senate issued a resolution declaring Feb. 28, 2011, Rare Disease Day in the U.S. A rare disease conference will take place at the National Institutes of Health (NIH) Clinical Center in Bethesda, MD.
On Monday and in the days leading up to it, patients and family members will share their stories, photos, and videos online. NORD and other patient organizations will conduct awareness events for the public and for state and national policymakers. In addition, radio and television “media tours” are planned, along with a barnstorm of postings on websites and blogs. With nearly 30 million Americans affected by rare diseases, the message is growing.
“People hear the word ‘rare’ and think it will never affect them,” Saltonstall said. “But everyone knows someone with a rare disease. And many of these diseases are extremely disabling or even life-threatening. Patients and their families have to deal with very challenging medical, financial and emotional issues.”
For information about Rare Disease Day activities by NORD and its partners in the U.S., go to www.rarediseaseday.us. The website includes a state-by-state listing of events. For information about global Rare Disease Day activities, go to www.rarediseaseday.org.
SOURCE National Organization for Rare Disorder (NORD)