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; visit http://www.accordalliance.org for the latest information.
Androgen Insensitivity Syndrome Support Group (AISSG)
PO Box 2148 Duncan, OK 73534-2148
http://www.aisdsd.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.geneticalliance.org/organization/ksa,-inc.-klinefelter-syndrome-associates
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.turnersyndrome.org
XY Turner
Box 5166 Laurel, MD 20726
http://www.xyxo.org
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