SUPPORT GROUPS AND DIAGNOSIS-SPECIFIC INFORMATION

You may not find a group that deals specifically with your child’s DSD. There isn’t a support or information group for every kind of DSD. If you’re in that position, contact a group that might make sense, and tell them that there isn’t a group for your child’s DSD so you’d like their help as much as possible. Later, if you find yourself feeling strong, think about starting a group for your child’s DSD.

Disclaimer: Although all of the following groups have useful information and contacts to share, this list should not be construed as a blanket endorsement of their work. Furthermore, the list is not exhaustive, and support group contact information changes frequently: websites may be more accurate than mailing addresses; consult http://www.dsdguidelines.org for the latest information.

Intersex Society of North America (ISNA)
            979 Golf Course Drive #282 Rohnert Park, CA 94928
            http://www.isna.org

Androgen Insensitivity Syndrome Support Group (AISSG)
            PO Box 2148 Duncan, OK 73534-2148
            http://www.aissgusa.org

Androgen Insensitivity Syndrome Support Group Canada (East)
             #206, 115 The Esplanade Toronto, Ontario M5E 1Y7 Canada
            email: sallie AT ican DOT net (English)
            email: orquideequebec AT yahoo DOT ca (French)

Androgen Insensitivity Syndrome Support Group Canada (West)
            #17, 3031 Williams Road Richmond, B.C. V7E 1H9 Canada
            email: lesnick AT shaw DOT ca

CARES Foundation Congenital Adrenal Hyperplasia Education & Support
            189 Main Street, 2nd floor Millburn, NJ 07041
            http://www.caresfoundation.org

Hypospadias & Epispadias Association (HEA)
            240 W. 44th St. Suite 1A New York, NY 10036
            http://www.heainfo.org

Klinefelter Syndrome and Associates
            11 Keats Court Coto de Caza, CA 92679
            http://www.genetic.org/ks/

The Magic Foundation
            6645 W. North Avenue Oak Park, IL 60302
            http://www.magicfoundation.org

MRKH Organization
            P.O. Box 301494 Jamaica Plain, MA 02130
            http://www.mrkh.org

Turner Syndrome Society of the U.S.
            14450 TC Jester, Suite 260 Houston, TX 77014
            http://www.turner-syndrome-us.org

XY Turner
            Box 5166 Laurel, MD 20726
            http://www.xyxo.org