Parent Resources: Diagnoses-related Resources
Congenital diaphragmatic hernia (CDH)
Cherubs—Congenital Diaphragmatic Hernia
Support group for parents and families of children with diaphragmatic hernia
http://www.cherubs-cdh.org
U.S. Post Office mail address:
CHERUBS
P.O. Box 1150
Creedmoor, NC 27522
919-693-8158 (telephone)
Toll-free number: 877-403-1944; US only and for families who cannot afford long-distance calls
USA fax: 707-924-1114
Gastroschisis
GEEPS
Gastroschisis Exomphalos Extrophies Parent Support
An international network of families and friends of children born with abdominal abnormalities.
www.geeps.co.uk
Sacrococcygeal teratoma (SCT)
SCT Foundation
Founded by a mother whose child had an SCT. Includes an online support group and a link to other web sites, including The Children’s Hospital of Philadelphia.
http://www.sctfoundation.org
Spina bifida
Spina Bifida Association
A comprehensive source of information and resources about spina bifida, the most common permanently disabling birth defect in the U.S.
http://www.spinabifidaassociation.org
Twin anomalies
The Twin-Twin Transfusion Syndrome Foundation
Includes information for families during and after pregnancy, research updates, a message board and much more.
http://www.tttsfoundation.org
Center for Loss in Multiple Birth (CLMB)
Support organization for parents who have lost one or more of their children during a multiple gestation pregnancy. Special newsletters cover topics, including “knowing ahead,” by and for parents who have learned during pregnancy that one of their twins or multiples will not live long after birth. “Going longer,” was written by and for parents who are going through the remainder of a twin or higher multiple gestation pregnancy after one of the babies has died in utero.
http://climb-support.org
Twin Hope
Established in 1994, Twin Hope is a voluntary private non-profit organization dedicated to serving families, educating the public and professionals and broadening awareness of Twin-Twin Transfusion Syndrome and other twin-related illnesses.
http://www.twinhope.org
U.S. Post Office mail address:
Twin Hope, Inc.
2592 West 14th Street
Cleveland, Ohio 44113
502-243-2110 (Twin Hope 24-hour hotline)
E-mail: twinhope@twinhope.com
Omphalocele
Mothers of Omphaloceles (MOOS)
Internet support group for families of children with omphaloceles. Includes links to other resources and addresses all facets of the condition.
http://omphalocele.com
Contact Us
- 1-800-468-8376
- (1-800-IN-UTERO)
