Hayden's Hope

Wednesday, July 28, 2010

NORD Press Release

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…"

Monday, July 5, 2010

Congressional Causus on Rare & Neglected Diseases Formed

John Crowley, whose family’s story is portrayed in the feature film Extraordinary Measures starring Harrison Ford and Brendan Fraser, announced at the NORD Gala on May 18 that he and NORD President and CEO Peter L. Saltonstall filed papers that day to pave the way for establishment of a Congressional Caucus on Rare and Neglected Diseases.
The Caucus will provide a forum within the U.S. Congress to focus on issues and legislation related to rare diseases and orphan product development. Crowley and Saltonstall have been working with legislators and legislative aides to lay the groundwork for the Caucus.
To learn more, visit the National Organization of Rare Diseases (NORD) for more information at http://www.rarediseases.org/.