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
• Anencephaly Support Foundation 
(www.familyvillage.wisc.edu/lib_anen.htm)
• Anencephaly Net   
(www.anencephaly.net/)
• Yahoo Support Group  
(http://health.groups.yahoo.com/group/anencephaly/)
• Anencephaly Information  
(www.anencephalie-info.org/e/index.htm)

Spina bifida
• Spina Bifida Association of America (SBA)
(www.sbaa.org/)
• SB-Parents    
(http://health.groups.yahoo.com/group/SB-Parents/)
• Children with Spina Bifida: A Resource Page for Parents
(www.waisman.wisc.edu/~rowley/sb-kids/)
• Spina Bifida Association of America (SBA) (www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8028963/k.BE67/Home.htm)
• Spina Bifida Association - St. Louis 
(www.sbstl.com/)

Hydrocephalus 
• Hydrocephalus Association
(www.hydroassoc.org/)
• Hydrocephalus Groups
(http://health.groups.yahoo.com/group/lifewithhydrocephalus/)
• Hydrocephalus Groups (http://health.groups.yahoo.com/group/HydroParents/)
• Hydrocephalus Groups (http://health.groups.yahoo.com/group/hydrocephalus/)

Encephalocele
• Children's Craniofacial Association
(www.ccakids.com/)
• FACES The National Craniofacial Association
(www.faces-cranio.org)
• Fighters for Encephaly Defects Support (FEDS)
(412) 687-6437

Microcephalus
• Microcephaly Group
(microcephaly@yahoogroups.com )
• Microcephaly Group
(http://groups.yahoo.com/group/microcephaly/)
• Mild Micro Group
(http://groups.yahoo.com/group/mildmicro/)

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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/)
• Micropthalmia Group
(http://groups.yahoo.com/group/Microphthalmia)

Congenital cataract
• Congenital Cataract
(www.qualityhealth.com/health-encyclopedia/multimedia/congenital-cataract)
• Cataracts Support Group
(www.drugs.com/answers/support-group/cataract/)
• Cataracts Support Group
(www.dailystrength.org/c/Cataracts/support-group)

Aniridia
• Aniridia Foundation International
(www.aniridia.net/)
• Aniridia Foundation International Facebook
(www.facebook.com/pages/Aniridia-Foundation-International/183649933901)
• Aniridia Network
(http://aniridia.org/)

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CARDIOVASCULAR

• Congenital Heart Information Network
(http://tchin.org/)
• Little Hearts (www.littlehearts.org/)
• Congenital Heart Defect Group
(http://health.groups.yahoo.com/group/congenitalheartdefectsupport/)
• It's My Heart
(www.itsmyheart.org/imh-chapters/)
• American Heart Association
(www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/About-Congenital-Heart-Defects_UCM_001217_Article.jsp)
• Mended Little Hearts
(www.mendedlittlehearts.org/chdresources.shtml)
• Cove Point Foundation
(www.pted.org/)

Common truncus
• HeartPoint
(www.heartpoint.com/congheartdx.html)
• The Heart Institute for Children
(www.thic.com/)
• National Center for Biotechnology Information
(www.ncbi.nlm.nih.gov/sites/ga?disorder=Persistent%20truncus%20arteriosus)

Transposition of great arteries
• The Heart Institute for Children
(www.thic.com/transposition.htm)
• HeartPoint
(www.heartpoint.com/congtranspos.html)
• Little Hearts
(www.littlehearts.org/)

Tetralogy of Fallot
• The Heart Institute for Children
(www.thic.com/tetralogy.htm)
• HeartPoint
(www.heartpoint.com/congtetralogy.html)
• Medline Plus
(www.nlm.nih.gov/medlineplus/ency/article/001567.html)
• National Heart Lung and Blood Institute
(www.nhlbi.nih.gov/health/health-topics/topics/tof/)

Ventricular septal defect 
• HeartPoint
(www.heartpoint.com/congvsd.html)
• Medline Plus
(www.nlm.nih.gov/medlineplus/ency/article/001099.htm) 

Atrial septal defect
• HeartPoint
(www.heartpoint.com/congasd.html)
• Medline Plus
(www.nlm.nih.gov/medlineplus/ency/article/000157.htm)
• Atrial Septal Defect Survivors
(www.asdsurvivors.org/)

Atrioventricular septal defect (endocardial cushion defect)
• The Heart Institute for Children (www.thic.com/coarctation.htm)
• Medline Plus
(www.nlm.nih.gov/medlineplus/ency/article/007324.htm)

Pulmonary valve atresia and stenosis
• The Heart Institute for Children
(www.thic.com/patent.htm)

Tricuspid valve atresia and stenosis
• Medline Plus
(www.nlm.nih.gov/medlineplus/ency/article/001110.htm)

Ebstein anomaly
• HeartPoint
(www.heartpoint.com/congepstein.html)

Aortic valve stenosis
• Medline Plus ~ scroll down to Specific Conditions list
(www.nlm.nih.gov/medlineplus/congenitalheartdefects.html)

Hypoplastic left heart syndrome
• Congenital Heart Information Network
(http://tchin.org/)
• Little Hearts
(www.littlehearts.org/)
• Children with HLHS
(http://health.groups.yahoo.com/group/childrenwithhlhs/)
• HLHS Group
(http://health.groups.yahoo.com/group/chdwebringhlhs/)
• The Heart Institute for Children
(www.thic.com/hypoleft.htm)
• Medline Plus
(www.nlm.nih.gov/medlineplus/ency/article/001106.htm)

Patent ductus arteriosus 
• The Heart Institute for Children
(www.thic.com/patent.htm)
• HeartPoint
(www.heartpoint.com/congpda.html)
• Medline Plus
(www.nlm.nih.gov/medlineplus/ency/article/001560.htm)

Coarctation of aorta
• Medline Plus
(www.nlm.nih.gov/medlineplus/ency/article/000191.htm)
• The Heart Institute for Children
(www.thic.com/coarctation.htm)
• HeartPoint
(www.heartpoint.com/congheartdx.html)

Anomalous pulmonary venous return
• Medline Plus – Scroll down to Specific conditions list
(www.nlm.nih.gov/medlineplus/congenitalheartdefects.html)

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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/)
• Pierre Robin Network  
(www.pierrerobin.org/)
• CleftClub.com
(http://health.groups.yahoo.com/group/cleftclub/)
• Cleft Talk
(http://groups.yahoo.com/group/cleft_talk/)
• Cleft Chat
(http://health.groups.yahoo.com/group/cleftchat/)
• FACES
(faces@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

• IA (Imperforate Anus) Parents Support Group 
(http://health.groups.yahoo.com/group/IA-parents/)
• Rainbow Kids
(http://specialneedsadoption.rainbowkids.com/Anal_Atresia_-_Imperforate_Anus.aspx)
• Pull-Through Network
(www.pullthrunetwork.org/)

Pyloric stenosis
• Pyloric Stenosis Support
(www.cafemom.com/group/113668)
• American Pediatric Surgical Association
(www.pediatricsurgerymd.org/AM/Template.cfm?Section=List_Of_Conditions1&ContentID=1619&template=/CM/ContentDisplay.cfm)
• Infant Reflux Disease
(www.infantrefluxdisease.com/forums/)

Hirschsprung disease (congenital megacolon)
• American Pediatric Surgical Association
(www.pediatricsurgerymd.org/AM/Template.cfm?Section=List_Of_Conditions1&template=/CM/ContentDisplay.cfm&ContentID=1395)
• 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)
• The Mayo Clinic
(www.mayoclinic.com/health/hirschsprungs-disease/DS00825)

Biliary atresia
• American Pediatric Surgical Association
(www.pediatricsurgerymd.org/AM/Template.cfm?Section=List_Of_Conditions1&ContentID=1316&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)
• Biliary Atresia Network
(http://health.groups.yahoo.com/group/BiliaryAtresiaNetwork/)

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

Hypospadias
• Hypospadias Support Group
(www.hypospadias.co.uk/)

Epispadias
• Hypospadias and Epispadias Association
(www.heainfo.org/)

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MUSCULOSKELETAL

• Helping Hands Foundation
(www.helpinghandsgroup.org/)
• Superhands Network
(www.superhands.us/)
• STEPS
(www.steps-charity.org.uk/)

Limb reduction deformity
• Limb Differences
(http://limbdifferences.org/)
• Adams Oliver Syndrome Support Group
(Email: sandy.ivins@btinternet.com)
• AOSupport
(www.aosupport.org/)
• Making Contack (AOS)
(www.makingcontact.org/)

Gastroschisis
• Avery's Angels
(www.facebook.com/averysangels#!/photo.php?fbid=10151175942114874&set=a.10150789513484874.464836.243044679873&type=1&theater)
• GEEPS
(www.geeps.co.uk/gastroschisis.htm)
• American Pediatric Surgical Association
(www.pediatricsurgerymd.org/AM/Template.cfm?Section=List_Of_Conditions1&template=/CM/ContentDisplay.cfm&ContentID=1311)
• Gastroschisis Support Group
(www.gastroschisismiracles.webs.com/)

Omphalocele
• American Pediatric Surgical Association
(www.pediatricsurgerymd.org/AM/Template.cfm?Section=List_Of_Conditions1&template=/CM/ContentDisplay.cfm&ContentID=1598)

Congenital hip dislocation
• Gillette Children's Specialty Healthcare
(www.gillettechildrens.org/conditions-and-care/developmental-dysplasia-of-the-hip-ddh/)
• Baby Center
(http://community.babycenter.com/post/a25941553/congenital_hip_dislocation_anyone)
• Children's Orthopaedic Associates
(www.orthokids.org/CHD)

Congenital diaphragmatic hernia
• American Pediatric Surgical Association
(www.pediatricsurgerymd.org/AM/Template.cfm?Section=List_Of_Conditions1&template=/CM/ContentDisplay.cfm&ContentID=1359)
• CHERUBS
(www.cherubs-cdh.org/)
• Support Group
(http://groups.yahoo.com/group/cherubs/)

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CHROMOSOMAL

Trisomy 13 (Patau syndrome)
• Support Organization for Trisomy 18, 13, and Related Disorders (SOFT)
(www.trisomy.org/)
(www.trisomy.org/wp-content/uploads/2012/09/Trisomy-13-Facts-8-20-12.pdf)

Trisomy 21 (Down syndrome)
• National Down Syndrome Congress
(http://ndsccenter.org/)
• National Association for Down Syndrome
(www.nads.org/)
• Kids Health
(http://kidshealth.org/parent/medical/genetic/down_syndrome.html)
• The National Down Syndrome Society 
(www.ndss.org/)
• Trisomy 18 (Edwards syndrome) Chromosome 18
(www.chromosome18.org/)
• Support Organization for Trisomy 18, 13, and Related Disorders (SOFT)
(www.trisomy.org)
(www.trisomy.org/wp-content/uploads/2012/09/Trisomy-18-Facts-8-20-12.pdf)

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FAS, AMNIOTIC BANDS

Fetal alcohol syndrome
• Family Resource Institute
(www.fetalalcoholsyndrome.org/)
• FAS Forum
(http://health.groups.yahoo.com/group/FASForum/)
• FAS Link
(www.acbr.com/fas/faslink.htm)
• The Family Empowerment Network (FEN)
(http://pregnancyandalcohol.org/)
• Fetal Alcohol and Drug Unit (FADU)
(http://depts.washington.edu/fadu/)
• Fetal Alcohol Spectrum Disorders (FASD)
(http://fasdcenter.samhsa.gov/)
• Fetal Alcohol Syndrome Consultation, Education and Training Services (FASCETS)
(www.fascets.org/)

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

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  © 2014, National Birth Defects Prevention Network