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To aid people who are seeking information about specific genetic conditions,
contact with others impacted by a genetic condition, or professionals providing
genetic services, HGN is making available the following list of resources.
All the entities below receive some funding from the Genetics Services
Branch of the Maternal and Child Health Bureau, U.S. Department of Health
and Human Services.
Updated 3/18/99
Genetic Alliance
4301 Connecticut Ave. NW #404; Washington, DC 20008-2304
800/336-4363 or 202/966-5557, Fax:-8553, info@geneticalliance.org
http://www.geneticalliance.org
The Alliance was established in 1986 as a nonprofit organization dedicated
to helping individuals and families affected by genetic disorders. The Alliance
Web site lists publications (many of them free), upcoming events such as meetings
and conferences, and some 301 support groups in the Directory of National Genetic
Support Organizations and Related Resources. This directory, which gives full
contact information for each support group and links to other Web sites, is
also available in hard copy.
Regional Genetics Networks
Within their regions, the ten networks coordinate genetic services; promote
communication among genetic professionals and consumers through network newsletters,
meetings, and other events; share resources; and promote education and awareness
of genetic disorders.
Each network will answer inquiries about genetic evaluation and counseling
services.
- Genetics Network of New York, Puerto Rico, and the Virgin Islands
(GENES)
Genetic Services Program; Wadsworth Center; Empire State Plaza, Room E299;
P.O. Box 509; Albany, NY 12201-0509
518/474-7148, Fax: /473-1733, kbh02@health.state.ny.us
or kxg03@health.state.ny.us
- Great Lakes Regional Genetics Group (GLaRGG)
328 Waisman Center; University of Wisconsin; 1500 Highland Avenue; Madison, WI 53705-2280
608/265-2907, Fax: /263-3496, elbaum@waisman.wisc.edu
http://www.waisman.wisc.edu/glargg/index.htmlx
States served: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin
- Great Plains Genetics Service Network (GPGSN)
http://mchneighborhood.ichp.edu/gypcdrom/903643781.html
States served: Arkansas, Iowa, Kansas, Missouri, North Dakota, Nebraska,
Oklahoma, South Dakota
- Mid-Atlantic Regional Human Genetics Network (MARHGN)
Center for Human and Molecular Genetics; UMDNJ: New Jersey Medical School; Doctors Office
Center, Ste. 5400; 90 Bergen Street; Newark, NJ 07103
973/972-3302, Fax: -3310, rodriggi@umdnj.edu
States Served: District of Columbia, Delaware, Maryland, New Jersey, Pennsylvania,
Virginia, West Virginia
- Mountain States Regional Genetic Services Network (MSRGSN)
Colorado Department of Health; FCHS-MA-A4; 4300 Cherry Creek Drive South;
Denver, CO 80222-1530
303/692-2423, Fax: /782-5576, joyce.hooker@state.co.us
http://www.mostgene.org/index.htm
States Served: Arizona, Colorado, Montana, New Mexico, Utah, Wyoming
- New England Regional Genetics Group (NERGG)
P.O. Box 670; Mt. Desert, ME 04660
207/288-2704, Fax: -2705, nergg@acadia.net
http://www.nergg.org/
States Served: Connecticut, Maine, Massachusetts, New Hampshire, Rhode
Island, Vermont
- Pacific Northwest Regional Genetics Group (PacNoRGG)
CDRC-Clinical Services Building; 901 E. 18th Avenue; Eugene, OR 97403-5254
541/346-2610, Fax: -2624, ksilvey@oregon.uoregon.edu
http://mchneighborhood.ichp.edu/pacnorgg
States served: Alaska, Idaho, Oregon, Washington
- Pacific Southwest Regional Genetics Network (PSRGN)
http://mchneighborhood.ichp.edu/gypcdrom/903708105.html
States served: California, Hawaii, Nevada
- Southeastern Regional Genetics Group (SERGG)
http://mchneighborhood.ichp.edu/gypcdrom/903650180.html
States served: Alabama, Florida, Georgia, Kentucky, Louisiana, Mississippi,
North Carolina, South Carolina, Tennessee
- Texas Genetics Network
(TEXGENE)
U.T. Health Science Center; 7703 Floyd Curl Dr.; San Antonio, TX 78284-7802
210/567-5194, Fax: -5847, rosasd@uthsca.edu
http://www.tdh.state.tx.us/texgene/texgene.htm
State served: Texas
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