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Human
Genome News Archive Edition |
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Sponsored
by the U.S. Department of
Energy Human Genome Program
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Human Genome News, January-June 1997; 8:(3-4)
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.
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
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
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
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
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
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
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
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
States served: California, Hawaii, Nevada
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
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
Genetic Syndrome Support Group Listings
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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