National Organization for Rare Diseases
NORD - Press Release
July 21, 2010
WASHINGTON DC-----An advocate for people with rare diseases today told a U.S. Senate committee that the burden of funding and driving research on rare diseases too often falls upon patients and their families.
“As a society, it is wrong for us to expect people with devastating diseases to fund the search for their treatments,” said Diane Dorman, vice president for public policy of the National Organization for Rare Disorders (NORD). “There are nearly 7,000 rare diseases, and only about 200 of them have treatments. Many are not being studied by any researcher in government, academia or industry.
“Through golf tournaments, raffles…"