Birth Defects

Resources in this category:

Anencephaly Support Foundation
http://www.asfhelp.com/asf/home

This national non-profit foundation is dedicated to educating "parents, families and the educational and medical communities" regarding infant anencephaly (a developmental brain disorder characterized by the absence of a cranial vault). This site provides medical and prevention information, personal stories and support group information.

CHARGE Syndrome Foundation, Inc.
http://www.chargesyndrome.org/

The CHARGE Foundation Foundation offers booklets, newsletter, support contacts, information and referrals to parents of children afflicted with CHARGE Syndrome. This site contains a detailed definition of CHARGE Syndrome, on-line reference list, list of resources offered by the CHARGE Foundation, and links to other related sites.

March of Dimes Birth Defects Foundation
http://www.marchofdimes.com/

"The March of Dimes is a nonprofit organization dedicated to improving the health of babies by reducing birth defects and infant mortality." The site has information on birth defects, advice on having healthy babies, and infant health statistics.

Prader-Willi Syndrome Association
http://www.pwsausa.org/

"Prader-Willi Syndrome Association (PWSA) is dedicated to serving individuals affected by Prader-Willi Syndrome (PWS), their families, and interested professionals by providing information, education, and support services." This website provides facts on symptoms and treatment, diagnosistic criteria, recent publications, parent network, chat rooms, index of PWSA publications, and links to related sites.

Spina Bifida and Hydrocephalus Association of Canada
http://www.sbhac.ca/index.php?page=main

The mission of SBHAC is "to improve the quality of life of all individuals with Spina Bifida and/or Hydrocephalus and their families" by means of promoting research, increasing public awareness, and promoting the care and well-being of people with these diseases.

This bilingual (French and English) site contains information about the diseases, contact information, recent announcements, and numerous related links.

Spina Bifida Association of America
http://www.sbaa.org/site/c.gpILKXOEJqG/b.2016945/k.2321/Spin...

This site is full of information about this disease and its prevention. The site includes a nationwide clinic directory, facts about spina bifida, articles from the SBAA newsletter, and information for ordering publications.

Teratology Society
http://www.teratology.org/

"The Teratology Society is a multidisciplinary scientific society founded in 1960, the members of which study the causes and biological processes leading to abnormal development and birth defects at the fundamental and clinical level, and appropriate measures for prevention."

This site offers information about membership in this organization, upcoming meetings, a webboard to discuss teratology with colleagues, and a section devoted to students.