Diagnoses-related resources: Websites, books and publications | The Children's Hospital of Philadelphia

Center for Fetal Diagnosis and Treatment

Diagnoses-Related Resources

Congenital diaphragmatic hernia (CDH)

Cherubs

Non-profit group founded in 1995 to support families and medical care providers of children with congenital diaphragmatic hernia.
www.cherubs-cdh.org
Phone: 919-693-8158
Toll-free: 877-403-1944 (please U.S. calls only and for families who cannot afford long-distance calls)
Postal address: CHERUBS, P.O. Box 1150, Creedmoor, NC 27522

Breath of Hope

Breath of Hope exists to raise awareness of congenital diaphragmatic hernia (CDH) by working with parents, family members, and medical professionals to educate and support all who are affected by or want to learn more about CDH.
http://breathofhopeinc.com
Phone: (888) 264-2340
Postal address: PO Box 6627, Charlottesville, VA 22906 

Gastroschisis

GEEPS

Gastroschisis Exomphalos Extrophies Parent Support
An international network of families and friends of children born with abdominal abnormalities.
www.geeps.co.uk

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.net/wordpress/

Sacrococcygeal teratoma (SCT)

Elijah's Story: A Resource for Parents Confronting an SCT Diagnosis

Founded by a father whose child had an SCT. Includes an online support group and a link to other websites, including The Children's Hospital of Philadelphia.
http://www.sctsurvivor.com/

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.
www.spinabifidaassociation.org

Twin anomalies

Twin-Twin Transfusion Syndrome Foundation

Includes information for families during and after pregnancy, research updates, a message board and more.
www.tttsfoundation.org

Center for Loss in Multiple Birth (CLIMB)

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.
www.twinhope.org
Phone: 502-243-2110 (Twin Hope 24-hour hotline)
E-mail: twinhope@twinhope.com
Postal address: Twin Hope, Inc., 2592 West 14th St., Cleveland, OH 44113

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Information About Your Child's Condition

To learn more about your child's specific congenital defect, see our fetal diagnoses pages.

Hope for the Future

Read about the Center's annual family reunion and view photos of patients celebrating life.