Resources for Families

The information and resources listed are intended for educational use only and are provided solely as a service. The information provided should not be used for diagnosing or treating a health problem or disease, and is not a substitute for professional care. These links do not constitute an endorsement of these organizations or their programs by the National Birth Defects Prevention Network (NBDPN) and none should be inferred. The NBDPN is not responsible for the content of the individual organization web pages found at these links.

Free materials from the CDC! (fact sheets, brochures and posters on general birth defect information)

Please select a category from the list below:
Central Nervous System
Eye
Cardiovascular
Orofacial
Gastrointestinal
Rectal and Large Intestinal Atresia/Stenosis
Genitourinary
Musculoskeletal
Chromosomal
FAS, Amniotic Bands

CENTRAL NERVOUS SYSTEM

Anencephalus
• Facts about Anencephaly
(http://www.cdc.gov/ncbddd/birthdefects/anencephaly.html)
• Anencephaly Information
(http://www.ninds.nih.gov/disorders/anencephaly/anencephaly.htm)

Spina bifida
• Spina Bifida Association of America (SBA)
(www.sbaa.org/)
• Children with Spina Bifida: A Resource Page for Parents
(www.waisman.wisc.edu/~rowley/sb-kids/)

Hydrocephalus
• Hydrocephalus Association
(http://www.hydroassoc.org)
• Hydrocephalus Association on Facebook
(https://facebook.com/HydroAssoc)

Encephalocele
• National Organization for Rare Diseases (NORD): Encephalocele
(http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/867/viewAbstract)
• Boston Children's Hospital: Encephalocele Information
(http://www.childrenshospital.org/az/Site833/mainpageS833P1.html)

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EYE

Anophthalmia / Micorophthalmia
• International Children's Anophthalmia Network
(www.anophthalmia.org/)
• Micro and Anophthalmic Children's Society
(www.macs.org.uk/)

Congenital cataract
• American Association for Pediatric Ophthalmology and Strabismus
(http://www.aapos.org/terms/conditions/31)
• Congenital/pediatric cataract information and support (Pediatric Glaucoma and Cataract Family Association)
(http://pgcfa.org/)
• Congenital Cataract
(www.qualityhealth.com/health-encyclopedia/multimedia/congenital-cataract)

Aniridia
• Genetic Home Reference (U. S. National Library of Medicine)
(http://ghr.nlm.nih.gov/condition/aniridia)
• Aniridia Foundation International
(http://www.make-a-miracle.org/index.html)
(www.facebook.com/pages/Aniridia-Foundation-International/183649933901?ref=ts&fref=ts)

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CARDIOVASCULAR

OROFACIAL

Cleft palate, cleft lip
• Cleft Palate Foundation
(www.cleftline.org/)
• Children's Craniofacial Association
(www.ccakids.com/)
• American Cleft Palate-Craniofacial Association (ACPA)
(www.acpa-cpf.org/)
• FACES The National Craniofacial Association
(www.faces-cranio.org)
• Cleft Lip and Palate Association
(www.clapa.com/)

Choanal atresia
• Children’s Choanal Atresia Foundation
(www.babynose.org/index.html)

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GASTROINTESTINAL

Esophageal atresia, tracheoesophageal fistula
• EA/TEF Support Connection
(www.eatef.org/)
• Tef Vater Web
(www.tefvater.org/index2.html)

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RECTAL AND LARGE INTESTINAL ATRESIA/STENOSIS

• Pull-Through Network
(www.pullthrunetwork.org/)
• A personal story of VACTER and Intestinal Atresia
(http://intestionalatresiajourney.weebly.com)

Pyloric stenosis
• American Pediatric Surgical Association
(http://www.pediatricsurgerymd.org/AM/Template.cfm?Section=Conditions&ContentID=4310&template=/CM/ContentDisplay.cfm)
• Medline Plus
(http://www.nlm.nih.gov/medlineplus/ency/article/000970.htm)
• Kidshealth from Nemours
(http://kidshealth.org/parent/medical/digestive/pyloric.stenosis.html#)

Hirschsprung disease (congenital megacolon)
• American Pediatric Surgical Association
(http://www.pediatricsurgerymd.org/AM/Template.cfm?Section=Conditions&template=/CM/ContentDisplay.cfm&ContentID=4283)
• National Digestive Diseases Information Clearinghouse (NDDIC)
(http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/)
• National organization for Rare Diseases (NORD)
(www.rarediseases.org/rare-disease-information/rare-diseases/byID/727/viewAbstract)

Biliary atresia
• American Pediatric Surgical Association
(http://www.pediatricsurgerymd.org/AM/Template.cfm?Section=Conditions&ContentID=4337&template=/CM/ContentDisplay.cfm)
• American Liver Foundation
(www.liverfoundation.org)
• Children's Liver Disease Foundation
(www.childliverdisease.org)
• Children's Liver Association for Support Services
(www.classkids.org)

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GENITOURINARY

Renal agenesis/hypoplasia
• Potter's Syndrome
(www.potterssyndrome.org/)
• National Kidney Foundation
(www.kidney.org)
• American Association of Kidney Patients
(www.aakp.org)
• NIH/National Institute of Diabetes, Digestive & Kidney Diseases
(http://kidney.niddk.nih.gov/)

Bladder exstrophy
• Association for Bladder Exstrophy Community
(www.bladderexstrophy.com/)
• The Pull-Thru Network
(www.PullthruNetwork.org)
• Children's Hospital Boston
(www.childrenshospital.org/clinicalservices/Site1697/mainpageS1697P4.html/)

Obstructive genitourinary defect
• National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)
(http://kidney.niddk.nih.gov/kudiseases/pubs/newborns/)
• healthetreatment's Obstructive Genitourinary Defect community
(www.healthetreatment.com/community/obstructive-genitourinary-defect/)

Hypospadias
• Cincinnati Children’s
(http://www.cincinnatichildrens.org/health/h/hypospadias/)
• Hospital for Sick Kids
(http://www.aboutkidshealth.ca/En/HealthAZ/ConditionsandDiseases/GenitalandReproductiveDisorders/Pages/HypospadiasHome.aspx)
• Hypospadias and Epispadias Association
(www.heainfo.org/)

Epispadias
• Children’s Hospital of Philadelphia
(http://www.chop.edu/healthinfo/epispadias.html)
• Orpha.Net
(http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=en&Expert=93928)
• Hypospadias and Epispadias Association
(www.heainfo.org/)

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MUSCULOSKELETAL

Limb reduction deformity
• Centers for Disease Control and Prevention
(http://www.cdc.gov/ncbddd/birthdefects/ul-limbreductiondefects.html)
• Helping Hands Foundation
(www.helpinghandsgroup.org/)
• Limb Differences
(http://limbdifferences.org/)

Gastroschisis
• American Pediatric Surgical Association
(www.pediatricsurgerymd.org/AM/Template.cfm?Section=List_Of_Conditions1&template=/CM/ContentDisplay.cfm&ContentID=1311)
• Children’s Hospital of Philadelphia
(http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/gastroschisis.html)
• Avery's Angels
(https://www.facebook.com/averysangels?fref=photo)

Omphalocele
• Centers for Disease Control and Prevention
(http://www.cdc.gov/ncbddd/birthdefects/omphalocele.html)
• American Pediatric Surgical Association
(http://www.pediatricsurgerymd.org/AM/Template.cfm?Section=Conditions&template=/CM/ContentDisplay.cfm&ContentID=4300)

Congenital hip dislocation (dysplasia)
• American Academy of Orthopaedic Surgeons
(http://orthoinfo.aaos.org/topic.cfm?topic=a00347)
• Gillette Children's Specialty Healthcare
(www.gillettechildrens.org/conditions-and-care/developmental-dysplasia-of-the-hip-ddh/)
• Baby Center – Parent Support Group
(http://community.babycenter.com/find/sa?filter=Group&q=hip+dysplasia&x=0&y=0)

Congenital diaphragmatic hernia
• American Pediatric Surgical Association
(http://www.pediatricsurgerymd.org/AM/Template.cfm?Section=Conditions&ContentID=4271&template=/CM/ContentDisplay.cfm)
• National Institutes of Health – Genetic Home Reference
(http://ghr.nlm.nih.gov/condition/congenital-diaphragmatic-hernia)
• CHERUBS
(www.cherubs-cdh.org/)

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CHROMOSOMAL

Trisomy 13 (Patau syndrome)
• National Institutes of Health – Genetic Home Reference
(http://ghr.nlm.nih.gov/condition/trisomy-13)
• Support Organization for Trisomy 18, 13, and Related Disorders (SOFT)
(http://trisomy.org/?page_id=15711)

Trisomy 18 (Edwards syndrome)
• National Institutes of Health – Genetic Home Reference
(http://ghr.nlm.nih.gov/condition/trisomy-18)
• Support Organization for Trisomy 18, 13, and Related Disorders (SOFT)
(http://trisomy.org/?page_id=15714)

Trisomy 21 (Down syndrome)
• National Institutes of Health – Genetic Home Reference
(http://ghr.nlm.nih.gov/condition/down-syndrome)
• National Down Syndrome Congress
(http://ndsccenter.org/)
• National Association for Down Syndrome
(www.nads.org/)
• The National Down Syndrome Society
(www.ndss.org/)

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FAS, AMNIOTIC BANDS

Fetal alcohol syndrome
• Family Resource Institute
(www.fetalalcoholsyndrome.org/)
• Fetal Alcohol Spectrum Disorders (FASD)
(http://fasdcenter.samhsa.gov/)
• National Organization of Fetal Alcohol Syndrome
(www.nofas.org/resources)

Amniotic bands
• Amniotic Band Syndrome
(www.amnioticbandsyndrome.com/)
• Superhands Network
(www.superhands.us/)

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