FW: Genetic Alliance launches Disease InfoSearch!
----- Original Message -----
From: Mary Davidson
To: E-Broadcast@...
Sent: Monday, May 19, 2003 4:06 PM
Subject: [E-broadcast] FW: Genetic Alliance launches Disease InfoSearch!




PRESS RELEASE ? URGENT ? FOR IMMEDIATE DISSEMINATION

Washington DC, May 19, 2003 - The Genetic Alliance has launched the first
stage of Disease InfoSearch - an innovative public information search tool
for genetic disease information that can be viewed at
http://www.geneticalliance.org/DIS/. The Genetic Alliance developed this
Internet-based search tool to facilitate public access to quality
lay-oriented information about genetic and rare diseases in language that is
understandable and useful.

Disease InfoSearch (DIS) is a robust catalogue of genetic conditions - rare
to common - that is searchable according to Clinical Description (signs &
symptoms), Treatment Research, Genetic Information (molecular), Support
Groups & References (newsletters, listservs, self-help books), Insurance
Issues, Arts & Literature and Other Resources. At this time, Disease
InfoSearch has been populated by more then 60 genetic conditions, including
Tuberous Sclerosis, Tay-Sachs disease, Lowe syndrome, Breast Cancer, Gaucher
disease, Fabry disease, Mannosidosis, Progeria and others. It is now ready
for expanded population by the 600 member organizations within the Genetic
Alliance coalition. This dynamic and up-to-date public information system
is driven and maintained through the expertise and vigilance of
disease-specific lay advocacy organizations and their professional advisory
boards; editorial review and quality control are provided by genetic
counselors that staff the Genetics Education and Resource Center.

With increasing frequencies, the patient advocacy community is the place
where the public goes to find useful and credible information about specific
genetic diseases in lay language. Capitalizing on the enhanced expertise of
disease specific lay organizations, sixteen years experience responding
one-by-one to Helpline caller inquiries and new technologies that allow a
high tech/ high touch approach, Disease InfoSearch was developed to promote
easy and fast access to information essential to making health care
decisions. Disease InfoSearch represents the Genetic Alliance's renewed
commitment to provide high quality information and cost effective resource
search tools that serve 'many' people in 24/7 time. Users are invited to
contact the Genetic Alliance Helpline, after researching the condition, for
assistance from genetic counselors in understanding the information found
through the Disease InfoSearch tool.

To date, biotechnology leaders Genzyme Corporation of Cambridge, MA and
Perlegen Sciences of Palo Alto, CA have provided critical funding support
for this project; additional funding is being secured to support continued
population of this new information resource for genetic diseases, disorders
and conditions.
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As the leading advocacy, support and education organization for those with
genetic conditions, the Genetic Alliance works together with more than 600
member patient, research and health care member organizations to promote
healthy lives for everyone with genetic conditions. The Genetic Alliance
combines the voices of those at the forefront of genetic research to shape
public policies that ensure affordable and equitable access to the services
and technologies holding the promise of healthier lives. Essential
information and support are provided to people with genetic disorders and
technical capacity building assistance to advocacy groups. The Genetic
Alliance is located at 4301 Connecticut Ave NW, Suite 404, Washington DC
20008-2369; 202.966.5557 (tel); 202.966.8553 (fax); info@...
(email) and www.geneticalliance.og <http://www.geneticalliance.og/>
(website).