Birth Defects

Resources in this category:

Amniotic Band Syndrome
http://www.amnioticbandsyndrome.com/

Written by a parent of an amniotic band syndrome child, the website thoroughly describes all aspects of the syndrome, provides a glossary of terms, gives additional links, and offers a shared area for family stories involving the syndrome.

Children with Spina Bifida
http://www.waisman.wisc.edu/~rowley/sb-kids/index.html

An informative and useful site for parents and professionals who deal with children with spina bifida. The site contain information in six categories: Spina Bifida (organizations, links); Related Diagnosis; Learning Issues; Family Support; Tests, Surgeries, and Treatments; and Miscellaneous.

Cleft Palate Foundation
http://www.cleftline.org/

Contains advise and information for families and health professionals. The site includes general information, glossary, health care assistance, links, news, and numerous helpful fact sheets for living with a cleft palate.

Down Syndrome: Health Issues
http://www.ds-health.com/

Support and informational site written by a pediatrician and father of a Down Syndrome child. Contains health articles, informational lists compiled by the author, health guidelines, current controversies, and links to additional sites.

Family Village - A Global Community of Disability-Related Resources
http://www.familyvillage.wisc.edu/

Family Village offers many links on disability related subjects. Physical, mental, and learning disabilities are covered. Enter the library to find links about disabilities. Enter the school to find information on accessibility.

FOCUS Families
http://www.focusfamilies.org/focus

"FOCUS Families provides 'Information, Education and Support' ™ to those affected by Optic Nerve Hypoplasia (ONH) & Septo Optic Dysplasia (SOD) world wide." The site offers online support groups, information, current research, glossary, and a story center.

International Federation for Hydrocephalus and Spina Bifida
http://www.ifglobal.org/home.asp?lang=1&main=1

"'if' aims to disseminate information and expertise throughout the world to families, individuals, professionals and volunteers involved in the Hydrocephalus and Spina Bifida field."

The National Down Syndrome Society Web Site
http://www.ndss.org/

"The Internet's most comprehensive information source on Down's Syndrome." Headings include research, communities, news and events, and advocacy. The information and resources section contains such topics as health, development, schooling, life planning, and additional resources. Available in Spanish and English.

National Organization of Rare Disorders
http://www.rarediseases.org/

A comprehensive site containing an index of rare disorders and databases containing articles, research, drug options, and links to support groups. The site also has a medical assistance program and recent news about rare disorders.

Pyloric Stenosis
http://kidshealth.org/parent/medical/digestive/pyloric_steno...

"Pyloric stenosis, a condition that affects the gastrointestinal tract during infancy, can cause your baby to vomit forcefully and often and may cause other problems such as dehydration and salt and fluid imbalances." The page explores symptoms, treatments, and further information.

Spina Bifida
http://www.nlm.nih.gov/medlineplus/spinabifida.html

The site contains many links to general information, symptoms, screening, research, treatment, law, organizations, and statistics about spina bifida.