Education and support for people dealing with hypospadias and epispadias

Support Groups

If you know of a link to a support group, please let me know.

Self-Help Groups (all conditions)

Self-Help Clearinghouse (world-wide list):
http://www.medhelp.org/NJGroups/clearinghouse.htm#INTERNATIONAL

Self-Help Clearinghouses (world-wide list):
http://www.umdnj.edu/psyevnts/selfclear.html#Meetings

Hypospadias

CaliforniaHypo: California Hypospadias
http://health.groups.yahoo.com/group/CaliforniaHypo/?v=1&t=search&ch=web&pub=groups&sec=group&slk=7

San Antonio Men with Hypospadias Support Group
http://groups.yahoo.com/adultconf?dest=%2Fgroup%2FSanAntonioHypospadiasSociety%2F%3Fv%3D1%26t%3Dsearch%26ch%3Dweb%26pub%3Dgroups%26sec%3Dgroup%26slk%3D10

HypoMenCO: Hypospadias Men in Colorado
http://groups.yahoo.com/group/HypoMenCO/?v=1&t=search&ch=web&pub=groups&sec=group&slk=6

teenswithmalebirthdefects: Teens with male birth defects
http://groups.yahoo.com/group/teenswithmalebirthdefects/?v=1&t=search&ch=web&pub=groups&sec=group&slk=5

Boys_with_HS: Moms with boys with Hypospadias
http://groups.yahoo.com/group/Boys_with_HS/?v=1&t=search&ch=web&pub=groups&sec=group&slk=4

hypo_penis : Hypospadias Penis Owners and Lovers
http://groups.yahoo.com/group/hypo_penis/

Hypospadias Support Group (UK Group, mostly for mothers)
http://www.hypospadias.co.uk/cgi-bin/yabb2/YaBB.pl

Inguinal Hernia and Hypospadias Support Group
http://www.cafemom.com/group/inguinalhernia.hypospadias

lamiaipospadia · La mia ipospadia (in Italian)
http://it.groups.yahoo.com/group/lamiaipospadia/?v=1&t=search&ch=web&pub=groups&sec=group&slk=1

Hypospadias support group in Italy (in Italian)
Information about their mailing list and Yahoo support group:
http://www.ipospadia.it/mailing.htm

nospetits_AMOUR: SYNDROME DE WOLF-HIRSCHHORN (in French)
http://cf.groups.yahoo.com/group/nospetits_AMOUR/?v=1&t=search&ch=web&pub=groups&sec=group&slk=8http://cf.groups.yahoo.com/group/nospetits_AMOUR/?v=1&t=search&ch=web&pub=groups&sec=group&slk=8

Epispadias

Listserve Support Group at Hospital for Sick Kids, Toronto, Ontario, Canada
A 'world-wide' internet support group that uses your own personal e-mail and is available to all those interested in discussing bladder exstrophy (classic, cloacal) and its related conditions (i.e., epispadias). To subscribe, send an email to majordomo@sickkids.on.ca , leave the subject area blank, and in the body type the following two words: subscribe exstrophy . After receiving confirmation that you are a member of the listserve support group, post all messages to the support group by emailing exstrophy@sickkids.on.ca

Bladder Exstrophy

Association for the Bladder Exstrophy Community (ABC)
3075 First Street
La Salle, Michigan
USA 48145
Available by phone: Monday - Friday 9am-4pm EST
1-866-300-2222 Toll Free in U.S.
1-(734) 243-9912 (outside U.S)
or 519-679-8774 (In Canada)
Fax : (734) 243-9912
http://www.bladderexstrophy.com/default.htm
Includes a world-wide list of support groups

Listserve Support Group at Hospital for Sick Kids, Toronto, Ontario, Canada
A 'world-wide' internet support group that uses your own personal e-mail and is available to all those interested in discussing bladder exstrophy (classic, cloacal) and its related conditions (i.e., epispadias). To subscribe, send an email to majordomo@sickkids.on.ca , leave the subject area blank, and in the body type the following two words: subscribe exstrophy . After receiving confirmation that you are a member of the listserve support group, post all messages to the support group by emailing exstrophy@sickkids.on.ca

Tri-State Bladder Exstrophy Support Group

Westchester Medical Center
Contact: Dr. Edward Reda
19 Bradhurst Avenue, Suite 2575
Hawthorne, NY 10532
Phone (914) 493-8628 FAX (914) 493-8564 or email info@pedsurology.com

Intersex

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 @ican .net (English)
email: orquideequebec @yahoo.ca (French)

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

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

The UK Intersex Association
http://www.ukia.co.uk/

intersexsupport: Intersex support - Where people with part of both sexes can talk
http://health.groups.yahoo.com/group/intersexsupport/