For Immediate Release
July 21, 2004

Genetic Alliance Backs ³Open Access² to NIH-Funded Medical Research
Disease and Patient Advocates ³Must be the Bridge to New Knowledge²

Washington, DC (July 21, 2004) ­ The Genetic Alliance, a coalition of 600
member organizations that advocate for patient families across America, have
urged Congress to support a National Institutes of Health (NIH) policy
requiring that biomedical research funded through NIH grants or contacts be
available at no extra cost to the public.

Sharon Terry, President and CEO of the Genetic Alliance, noted, ³This
consumer-centered measure is a long-overdue means by which to enhance public
health education, speed the translation of genetic advances into quality,
affordable health care, and inform and empower patients in their health care
decisions.²

In the text of her letter to Representative Ralph Regula (R-OH), Chairman of
the Labor, Health and Human Services, Education and Related Agencies
Appropriations Subcommittee, Terry also argued: ³Today, the Internet brings
access to billions of pages of information ­ yet most American taxpayers do
not have access to the reports on biomedical research conducted with U.S.
Government funds.²

³It is sometimes suggested that this information is not available to the
Ohomemaker in Nebraska¹ because she is ill equipped to deal with this
information. We know, from our 600 members ­ disease-specific advocacy
organizations ­ that the homemaker has many resources to help her use that
information. Sthis access is critical for the thousands of rare diseases ­
clinicians are unable to keep up with information on 6000 rare diseases, and
patients must be the bridge to new knowledge.²

Terry¹s letter [copy available upon request] supports a provision developed
by Regula¹s subcommittee and approved by the House Appropriations Committee
to remove barriers to open access by requiring the results of researched
funded by the National Institutes of Health (NIH) be made available online,
upon or shortly following publication, for no extra charge to the American
people.

The Genetic Alliance is a nonprofit international coalition comprised of
millions of individuals with genetic conditions and more than 600 advocacy,
research and health care organizations that represent their interests. The
Genetic Alliance promotes healthy lives by working to speed the translation
of genetic advances into quality and affordable health care, public
awareness and consumer-centered public policies. More information on the
Alliance may be found at www.geneticalliance.org
<http://www.geneticalliance.org/> .

Press contacts:
Sharon F. Terry Susan Ghanbarpour, MA
Director of Outreach
Phone: (202) 966-5557 sghanbar@...
sterry@...