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"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 may have difficulty accessing it because of reimbursement or other issues."
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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 and on the need for more research on these diseases.
Events planned in the U.S. for Rare Disease Day 2010 include:
Rare Disease Day was launched in 2008 by the European Rare Disease Organization, EURORDIS. Last year, EURORDIS asked NORD to sponsor Rare Disease Day in the U.S. Now the day is also being observed in Australia, South America, China and--for the first time this year--Japan.
In the U.S., a disease is considered rare if it affects fewer than 200,000 Americans. There are thought to be nearly 7,000 such diseases affecting nearly 30 million Americans, or about 1 in 10 people.
"More than half of the patients are children," Saltonstall said. "And many of these diseases are extremely disabling or even life-threatening. Patients and their families often have to deal with very challenging medical, financial and emotional issues."
Rare Disease Day 2010 will highlight the need for more medical research. While progress has been made in the development of treatments in recent years, about 15 million Americans still have rare diseases for which there is no FDA-approved treatment. In many cases, no research is being done on those diseases.
For information about Rare Disease Day activities by NORD and its partners in the U.S., go to www.rarediseaseday.us. For information about global Rare Disease Day activities, go to www.rarediseaseday.org.
-- An Advocacy Day on Capitol Hill hosted by an organization of college football players known as Uplifting Athletes -- Exhibits and displays such as a 60-foot paper link chain in the lobby of Children's Hospital Boston bearing the names of more than 350 rare diseases that do not have clinical trials -- Open houses and gatherings hosted by patient organizations -- An awareness day organized by pre-medical students at the University of Connecticut -- A rare disease symposium at the Sanford-Burnham Medical Research Institute in San Diego -- A "Wear Your Jeans on Rare Disease Day" campaign -- Online postings of patient stories and videos, newspaper and TV reports, and a "radio media tour" -- Creation of a Research "Hall of Fame"
SOURCE National Organization for Rare Disorders (NORD)
