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Human Genome News, January-June 1997; 8:(3-4)

Genetic Networks

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.

Alliance of Genetic Support Groups
35 Wisconsin Circle, Ste. 440; Chevy Chase, MD 20815
800/336-4363 or 301/652-5554, Fax:/654-0171, alliance@capaccess.org
http://medhelp.org/www/agsg.htm

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 Voluntary Organizations. This directory, which gives full contact information for each support group and links to other Web sites, is also available in hard copy.

The Council of Regional Networks (CORN) for Genetic Services

Emory University; Pediatrics-Medical Genetics; 2040 Ridgewood Drive; Atlanta, GA 30322
404/727-1475, Fax: -1827, cfh@rw.ped.emory.edu

CORN was formed in 1985 to coordinate 10 regional networks representing all 50 states; District of Columbia, Puerto Rico, and the Virgin Islands; national sickle cell disease programs; and the Alliance of Genetic Support Groups. CORN brings together network representatives to facilitate communication and planning for genetic services and to address national public health priorities in genetics.

Regional Genetics Networks

Within their regions, the ten networks coordinate genetic services; promote communication among genetic professionals and consumers through CORN membership, network newsletters, and 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
    518/486-2215, Fax: /473-1733, kbh02@health.state.ny.us or kxg03@health.state.ny.us

  • Great Lakes Regional Genetics Group (GLaRGG)

    328 Waisman Center; 1500 Highland Avenue; Madison, WI 53705-2280
    608/265-2907, Fax: /263-3496, elbaum@waisman.wisc.edu

    http://www.waisman.wisc.edu/glargg

    States served: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin

  • Great Plains Genetics Service Network (GPGSN)

    Pediatrics-Medical Genetics; University of Iowa; Iowa City, IA 52242-1083
    319/356-4860, Fax: -3347, dolores-nesbitt@uiowa.edu

    States served: Arkansas, Iowa, Kansas, Missouri, North Dakota, Nebraska, Oklahoma, South Dakota

  • Mid-Atlantic Regional Human Genetics Network (MARHGN)

    260 South Broad Street, Ste. 1000; Philadelphia, PA 19102-3865
    215/985-6759, Fax: -6763, marhgn1@aol.com

    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, 76363.3114@compuserve.com

    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, kerry_silvey@ccmail.uoregon.edu

    States served: Alaska, Idaho, Oregon, Washington

  • Pacific Southwest Regional Genetics Network (PSRGN)

    Genetic Disease Branch; California Department of Health Services; 2151 Berkeley Way, Annex 4; Berkeley, CA 94704
    510/540-2852, Fax: -3293, pcohen@genetic.dhs.cahwnet.gov

    http://www.psrgn.org

    States served: California, Hawaii, Nevada

  • Southeastern Regional Genetics Group (SERGG)

    Emory University; Pediatrics-Medical Genetics; 2040 Ridgewood Drive; Atlanta, GA 30322
    404/727-5844, Fax: -5783, mrl@rw.ped.emory.edu

    States served: Alabama, Florida, Georgia, Kentucky, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee

  • Texas Genetics Network (TEXGENE)

    Bureau of Children’s Health; Texas Department of Health; 1100 West 49th Street; Austin, TX 78756-3199
    512/458-7111 Ext. 2129, Fax: -7421, jlivingston@wc1.tdh.state.tx.us

Other Groups

  • National Health Information Center
  • National Organization of Rare Disorders

    Genetic Syndrome Support Group Listings

    http://members.aol.com/dnacutter/sgroup.htm

Compiled by Laura Yust, June 1997


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Human Genome Program, U.S. Department of Energy, Human Genome News (v8n3).

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