Health Links: WebSites For More Information:

The Registry encourages readers to review these sites and discuss these topics in further detail with your medical providers. The Registry is not responsible for the quality of information provided at external sites.

Iowa links

Iowa Registry for Congenital and Inherited Disorders (Home Page)

https://ircid.public-health.uiowa.edu/

The University of Iowa and University of Iowa Health Care

http://www.medicine.uiowa.edu/

https://uihc.org/medical-services (DEPARTMENTS)

https://www.uichildrens.org/ (PEDIATRICS)

https://uihc.org/ucedd/iowa-healthy-child-development-initiative (CHILD HEALTH DEVELOPMENT)

https://uihc.org/pregnancy-care-clinic (PREGNANCY & CHILDBIRTH)

https://www.uichildrens.org/genetics/ (GENETICS & BIRTH DEFECTS)

Children's Miracle Network: IOWA

http://www.uifoundation.org/cmn/ (CHILDREN'S MIRACLE NETWORK)

Virtual Hospital / UI Health Library

https://uihc.org/health-library

Iowa Department of Public Health

http://idph.iowa.gov/

State Department of Education:

Special Education
https://www.educateiowa.gov/

State Agency for the Visually Impaired

https://blind.iowa.gov/

Autism Society of IA

http://www.autismia.org

Brain Injury Alliance Iowa

http://www.biaia.org

Epilepsy Foundation

http://www.efa.org

Arc of Iowa (Persons with Mental Retardation)

http://www.thearc.org

Spina Bifida Association of America

http://spinabifidaassociation.org/

Technology-Related Assistance

http://iowaat.org/home

Iowa Compass (information and referral services)

http://iowacompass.org

Healthy Families Line (Telephone Number): Information and Referral Services

1-800-369-BABY or 1-800-369-2229

United States links

Alliance of Genetic Support Groups

http://www.geneticalliance.org

American Academy of Pediatrics

http://www.aap.org

Child Statistics

https://www.childstats.gov/

Cleft Palate Support, Research and Prevention

http://www.cleft.net

GeneTests (formerly GeneClinics)

https://www.genetests.org/

Human Genome Epidemiology Network (HuGENet)

http://www.cdc.gov/Genomics/hugenet/default.htm

International Clearinghouse for Birth Defects

http://www.icbdsr.org

National Association for the Education of Young Children

http://www.naeyc.org

KidNeeds.com (information and resource center)

http://www.kidneeds.com

March of Dimes

http://www.modimes.org

National Birth Defects Prevention Network

http://www.nbdpn.org

National Center for Biotechnology Information Online Mendelian Inheritance in Man (OMIM)

http://www.ncbi.nlm.nih.gov/omim

National Institute of Health

http://www.nih.gov

National Organization for Rare Disorders (NORD)

http://www.rarediseases.org

National Society of Genetic Counselors

http://www.nsgc.org

Phenylketonuria Organization

https://pkunews.org/

Teratology Society

http://www.teratology.org

Birth Defect Research for Children, Inc.

http://www.birthdefects.org/

National Organization on Fetal Alcohol Syndrome

https://rarediseases.org/organizations/national-organization-on-fetal-alcohol-syndrome/

Waisman Center: University of Wisconsin

http://www.waisman.wisc.edu/

National Birth Defects Prevention Study

https://www.cdc.gov/ncbddd/birthdefects/nbdps.html

Birth Defects Study to Evaluate Pregnancy Exposures

http://www.bdsteps.org/

 

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