Related Links and Web Resources
Population-based Birth Defects Surveillance Programs

If your state birth defect surveillance program has a web site that you would like to have
listed please click here.

National Links

• American Cleft Palate-Craniofacial Association (ACPA)
• Brave Kids
• Center for the Evaluation of Risks to Human Reproduction
• Family Voices
• Genetic Alliance
• Genetics & Your Practice
• HuGE Net
• March of Dimes
• National Fragile X Foundation
• Medical Genetics, University of Kansas Medical Center
• National Center for Biotechnology Information: Online Mendelian Inheritance in Man
• National Center on Birth Defects and Developmental Disabilities
• National Information Center for Childern and Youth with Disabilities
• National Organization for Rare Disorders (NORD)
• The Odyssey of Life: Morphing Embryos (PBS, Nova Online)
• Science Odyssey: DNA Workshop (PBS)
• Organization of Teratology Information Services (OTIS)
• Wide Smiles: Cleft Lip and Palate Resource

• International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR)
• New South Wales Birth Defects Register Annual Reports
• The On-Line Medical Dictionary (The CancerWEB Project)

HIPPA Links

• List of federal and state HIPAA resources from the North Carolina Department of Health and Human Services
• Department of Health and Human Services Office for Civil Rights
• U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule
• Centers for Disease Control and Prevention (HIPAA related to National Immunization Program)
• HIPAA Medical Privacy Rule: Information for North Carolina Public Agencies
• CDC Morbidity and Mortality Weekly Report (MMWR) vol 52 April 11, 2003
• Centers for Medicare and Medicaid Services: HIPAA 101 for Health Care Providers’ Offices
• HIPAA Privacy Rule: From the University of N.C. at Chapel Hilll
• American Medical Association
• Phoenix Health Systems HIPAAdvisory (FAQ)
• U.S. Department of Health and Human Services, Privacy of Health Information: HIPAA and Public Health Uses
  

Note: These sites have been assessed as useful for educational purposes. However, the NBDPN cannot guarantee the accuracy of all the content on these pages.

The CDC has established a listserv to enhance communication among people working at the state level in birth defects surveillance and prevention. A listserv is an e-mail forum where messages are posted to a common address which can be viewed by anyone subscribing to the listserv. Postings have included requests for information about cluster investigations, teratology web site addresses, announcements of meetings and job openings, requests for literature on birth defect surveillance, and minutes from the last meeting of birth defect surveillance programs. The NBDPN encourages all of its members and other interested persons to subscribe the listserv and join in the dialogue about birth defects.

To subscribe to CDC's Birth Defects Surveillance listserv, send the following internet e-mail:

TO: listserv@listserv.cdc.gov
SUBJECT: (leave blank)
MESSAGE: subscribe birth-defects-surv

If successful, you will get an e-mail reply with additional information about the listserv. If you have any problems subscribing, contact Cara Mai at cmai@cdc.gov.