Birth Defects Registry

• Central Nervous System
• Eye
• Cardiovascular
• Orofacial (Face)
• Gastrointestinal

• Rectal and Large Intestinal Atresia/Stenosis
• Genitourinary (Reproductive / Urinary) 
• Musculoskeletal
• Chromosomal
• FAS, Amniotic Bands

 Central Nervous System

Anencephalus

• Facts
• Information 

Spina Bifida

• Children with Spina Bifida: A Resource Page for Parents

Hydrocephalus

• Hydrocephalus Association
• Facebook Association  

Encephalocele

• National Organization for Rare Diseases NORD: Encephalocele
• Boston Children's Hospital: Encephalocele Information 

Eye

Anophthalmia / Micorophthalmia

• International Children's Anophthalmia Network
• Micro and Anophthalmic Children's Society

Congenital Cataract

• American Association for Pediatric Ophthalmology and Strabismus
• Congenital/pediatric cataract information and support
• Congenital Cataract

 Cardiovascular

• Cincinnati Children's Hospital Medical Center Heart Institute Encyclopedia – Cardiac anomalies/Congenital Heart Defects
• Medline Plus
• American Heart Association tambien en espanol
• Little Hearts
• Mended Little Hearts
• Cove Point Foundation – Congenital Heart Defects tambien en espanol
• Congenital Heart Public Health Consortium

Truncus Arteriosis Common truncus

• Children’s Hospital of Philadelphia Cardiac Center
• Cincinnati Children’s Heart Institute Encyclopedia

Transposition of the Great Arteries

• Children’s Hospital of Philadelphia Cardiac Center
• Cincinnati Children’s Heart Institute Encyclopedia

Tetralogy of Fallot

• Children’s Hospital of Philadelphia Cardiac Center
• Cincinnati Children’s Heart Institute Encyclopedia
• National Heart Lung and Blood Institute

Ventricular Septal Defect

• Children’s Hospital of Philadelphia Cardiac Center
• Cincinnati Children’s Heart Institute Encyclopedia
• Medline Plus
 

Atrial Septal Defect

• Children’s Hospital of Philadelphia Cardiac Center
• Cincinnati Children’s Heart Institute Encyclopedia
• Medline Plus
• Atrial Septal Defect Survivors

Atrioventricular Septal Defect endocardial cushion defect

• Children’s Hospital of Philadelphia Cardiac Center
• Cincinnati Children’s Heart Institute Encyclopedia
• Medline Plus

Pulmonary Valve Atresia and Stenosis

• Children’s Hospital of Philadelphia Cardiac Center – Pulmonary stenosis
• Medline Plus – Pulmonary valve atresia

Tricuspid Valve Atresia and Stenosis

• Cincinnati Children’s Heart Institute Encyclopedia
• Medline Plus – Tricuspid atresia

Ebstein Anomaly

• Cincinnati Children’s Heart Institute Encyclopedia
• HeartPoint

Aortic Stenosis

• Cincinnati Children’s Heart Institute Encyclopedia

Hypoplastic lLft Heart Syndrome

• Cincinnati Children’s Heart Institute Encyclopedia
• Medline Plus

Patent Ductus Arteriosus

• Cincinnati Children’s Heart Institute Encyclopedia
• Medline Plus

Coarctation of Aorta

• Cincinnati Children’s Heart Institute Encyclopedia
• Medline Plus

• Cincinnati Children’s Heart Institute Encyclopedia
• American Heart Association

Orofacial Face

Cleft Palate, Cleft Lip

• Children's Craniofacial Association
• FACES The National Craniofacial Association
• Cleft Lip and Palate Association

• Children’s Choanal Atresia Foundation

 Gastrointestinal

Esophageal Atresia, Tracheoesophageal Fistula

• Tef Vater Web 

Rectal and Large Intestinal Atresia/Stenosis

 A personal story of VACTER and Intestinal Atresia

Pyloric Stenosis

• Medline Plus
• Kidshealth from Nemours

Hirschsprung Disease (congenital megacolon)

• National Digestive Diseases Information Clearinghouse NDDIC
• National organization for Rare Diseases NORD

Biliary Atresia

• American Liver Foundation
• Children's Liver Association for Support Services

Genitourinary (Reproductive / Urinary)

Renal Agenesis/Hypoplasia

• National Kidney Foundation
• NIH/National Institute of Diabetes, Digestive & Kidney Diseases

Bladder Exstrophy

• The Pull-Thru Network
• Children's Hospital Boston

Obstructive Genitourinary Defect

• healthEtreatment's Obstructive Genitourinary Defect Community

Hypospadias

• Hospital for Sick Kids
• Hypospadias and Epispadias Association

• Orpha.Net
• Hypospadias and Epispadias Association

Musculoskeletal

Limb Reduction Deformity

• Helping Hands Foundation
• Limb Differences

Gastroschisis

• Children’s Hospital of Philadelphia
• Avery's Angels

Omphalocele

• American Pediatric Surgical Association

Congenital Hip Dislocation Dysplasia

• Gillette Children's Specialty Healthcare
• Baby Center – Parent Support Group

• National Institutes of Health – Genetic Home Reference
• CHERUBS

Chromosomal

Trisomy 13 (Patau syndrome)

• Support Organization for Trisomy 18, 13, and Related Disorders SOFT

Trisomy 18 (Edwards syndrome)

• Support Organization for Trisomy 18, 13, and Related Disorders SOFT

Trisomy 21 (Down syndrome)

• National Down Syndrome Congress
• The National Down Syndrome Society

FAS, Amniotic Bands

Fetal Alcohol Syndrome

• Fetal Alcohol Spectrum Disorders FASD
• National Organization of Fetal Alcohol Syndrome

Amniotic Bands

• Superhands Network