Albinism

• The Low Vision Centers of Indiana, provides and introduction to Albinism and other resources
  www.eyeassociates.com/images/albinism.htm

• NOAH - The National Organization for Albinism and Hypopigmentation
  www.albinism.org/

• International Albinism Center at the University of Minnesota
  www.cbc.umn.edu/iac

• Brief overview of Albinism by The Low Vision Center
  www.lowvision.org/albinism.htm

• NORD - National Organization for Rare Disorders, Inc.
  www.rarediseases.org/search/rdbdetail_abstract.html?disname=Albinism

• Personal website of the Hall family who adopted a little girl with albinism on 12-2-03
  groups.yahoo.com/group/1Samuel127/

• A yahoo group for people with albinism or people interested in albinism
  groups.yahoo.com/group/Albinism_International/?yguid=160377206

Amniotic Banding

• Common cause of missing digit, limbs, etc... in China kids
  www.amnioticbandsyndrome.com/index.php

• In depth discussion about ABS by a mother
  tanner.hope.twinstuff.com/custom2.html

• Wide miles provides information and a photograph
  www.widesmiles.org/syndrome/amnioband/

• Stories of Babies/Children born with ABS
  www.amnioticbandsyndrome.com/Babies-Children-Stories-c-1_3.html

Anal Atresia

• Brief definition of the condition
  www.medhelp.org/glossary2/new/GLS_0301.HTM

Anorectal malformations

• Including imperforate anus
  www.pullthrunetwork.org

Blindness/vision impairment

• Yahoo groups for families dealing with low vision issues
  groups.yahoo.com/group/blind-families

Birth Defects

• Birth Disorder Directory
  Pulls up links for any birth defect
  cshcn.org

Cleft Lip/Palate

• Comprehensive site by Cleft Advocate
  www.cleftadvocate.org

• Family Support Website
  www.cleft.org/

• Comprehensive resource provided by Wide Smiles
  www.widesmiles2.org

• Resources provided by the Cleft Palate Foundation in English and Spanish
  www.cleftline.org/

Congenital Cleft Foot and Hand

• Case report and discussion provided by Indian Pediatrics
  www.indianpediatrics.net/sep12.htm

Congenital muscular torticollis

• Condition cause a young child's head to tilt to one side, provided by Orthoseek.com
  www.orthoseek.com/articles/congenmt.html

• Information provided by Dr. Hull
  www.drhull.com/EncyMaster/T/torticollis.html

Developmental Dysplasia of the Hip (DDH)
formerly called Congenital Dislocation of the Hip

• Abnormal formation of the hip joint, information provided by Dr. Hull
  www.drhull.com/EncyMaster/H/hip_dysplasia.html

Down Syndrome

• Down syndrome encompasses a number of genetic disorders, of which trisomy 21 (a non disjunction) is the most representative, causing highly variable degrees of learning difficulties as well as physical disabilities.
  www.k12academics.com/downsyndrome.htm

• CHI partners with Reece's Rainbow for Down Syndrome placements.
  www.reecesrainbow.com

Dwarfism/Nanism

• Little People Association
  www.lpaonline.org/

• Organization dedicated to dwafism
  www.dwarfism.org/

Ectrodactyly

• Ectrodactyly-Ectodermal Dysplasia
  www.healthline.com/galecontent/ectrodactyly-ectodermal-dysplasia-clefting-syndrome

• Bree Walker, newscaster
  www.wic.org/bio/bwalker.htm

Eye disease/Vision problems

• Comprehensive list of eye conditions
  www.lowvision.org/disease.htm

General health information

• Resource for parents, kids, and teens
  kidshealth.org

• Shriner's Hospitals
  21 hospitals with free medial care for SN children
  www.shrinershq.org/hospitals/

• Travel Tips/electricity
  hints about using electrical applicances in China
  bluelotussoft.com/chinajourneys/electric.php

Glaucoma

• Provides a resource for articles related to glaucoma, as well as other information regarding eye health
  www.allaboutvision.com/conditions/glaucoma.htm

• Organization dedicated to glaucoma support
  www.glaucoma.org/

• Comprehensive resource for glaucoma information, provided by the Glaucoma Foundation
  www.glaucomafoundation.org/

• International Glaucoma Foundation
  www.glaucoma-association.com/nqcontent.cfm?a_id=483

• Historical Information
  www.mrcophth.com/Historyofophthalmology/glaucoma.html

Heart Defects

• Heart defect resources provided by the Methodist Hospital
  www.methodisthealth.com/tmhs/basic.do?channelId=-1073830831&contentId=1073791547&contentType=HEALTHTOPIC_CONTENT_TYPE

• Heart Defect - VSD. Hole in the wall between the two lower chambers of the heart, information provided by Dr. S. Sivasubramanian
  www.chdinfo.com/chdarticles/vsd1.htm

• University of Kansas Medical Center
  www.kumc.edu/gec/support/conghart.html

Hemifacial Microsomia

• Uneven development of one side of the face
  www.familyvillage.wisc.edu/lib_micr.htm

• The Microtia-Congenital Ear Deformity Institute
  www.microtia.net/webpages.asp?wpid=1

Hep B +

• Resource providing information for patients, doctors, and researchers regarding hepatitis B
  www.hepb.org/

• Inflammation of the liver, in-depth information (easy to read) provided by Pegasys, a medication for the treatment of Hepatitis B
  hepatitisc-treatment.org

Hypospadias

• Hypospadias and Epispadias Association (HEA)
  www.hypospadias.com

• A hypospadias support group for parents and patients
  www.groups.yahoo.com/list/hypospadias

• Birth abnormality of the genitals affecting infant males. Q and A provided by Columbia-Presbyterian Medical Center
  cpmcnet.columbia.edu/dept/urology/pediatric/hypospadias.html

• Uro-genital differences
  www.duj.com/hypospadias.html

Intersex/hemaphrodism

• Intersex information and peer support
  www.bodieslikeours.org/

• Intersex Society of North America
  www.isna.org/drupal/index.php

• Intersex Support Group International - Christian support site
  www.xyxo.org/isgi/content.html

Joint disorders

• Alphabetical directory of hip and knee joint disorders
  www.totaljoints.info

Limb Differences

• CAN (International Child Amputee Network)
  www.child-amputee.net

Microtia (Closed ear canal)

• Condition where external ear is not fully formed, information provided by Dr. Jim Anderson
  www.aboutfaceinternational.org/resources/conditions.php

• Microtia-Congenital Ear Institute
  www.microtia.net/

• Information regarding reconstruction of ear deformities (i.e. cosmetic surgery)
  www.microtia.com/

• Brief technical information provided by a plastic and craniofacial surgery center
  www.kidsplastsurg.com/earmicrotia.html

Neurofibromatosis

• Cafe au lait spots
  www.nfinc.org/nf1.shtml

Orthopedic issues

• Information for parents regarding pediatric orthopedics and pediatric sports medicine
  www.orthoseek.com

Play Therapy Providers

• Searchable database of accredited professionals across the United States
  www.playtherapy.org

Port Wine Birthmark

• Plastic surgery
  www.drman.com/port_wine_stains.html

• Searchable medical encyclopedia, provides general information
  www.nlm.nih.gov/medlineplus/ency/article/001475.htm

• Resource site for information about vascular and pigmented birthmarks
  www.birthmarks.net/

Ptosis (drooping eyelid)

• Brief definition and information about treatment
  www.tsbvi.edu/Education/anomalies/ptosis.htm

Radial Club Hand

• Includes pics of surgery to create a thumb
  www.gangahospital.com/microsurgery/new/radial.html

• Non-development of the radius, information provided by GPnotebook
  www.gpnotebook.co.uk/simplepage.cfm?ID=1838809101

Rectal deformities

• Some Congenital Deformities of the Rectum, Anus, Vagina and Urethra
  www.ncbi.nlm.nih.gov/pmc/articles/PMC2238541

Scoliosis

• Scoliosis treatment
  www.scoliosisrx.com

• Scoliosis Treatment Advanced Recovery System
  www.scoliosis.org

• Scoliosis Association
  scoliosis-assoc.org

• Comprehensive information regarding scoliosis, a condition affecting the curvature of the spine
  www.iscoliosis.com

• Scoliosis Research Society
  www.srs.org

• National Scoliosis Foundation
  www.scoliosis.org

Sensory Integration Disorder

• Information provided by an adoptive mother of three, disorder affects children adopted from institutions
  www.childrensdisabilities.info/sensory_integration/sensory-integration.html

Spina Bifida

• Spina Bifida Association of Western PA
  www.sbawp.org/

• Spina bifida information sheet compiled by the National Institute of Neurological Disorders
  www.ninds.nih.gov/health_and_medical/disorders/spina_bifida.htm

• Disability Info: Spina Bifida Fact Sheet
  www.nichcy.org/pubs/factshe/fs12txt.htm

• Yahoo groups for parents of China adoptees with spinal issues
  groups.yahoo.com/group/China_Adoption_Spina_Bifida/

• Spina Bifida Association of America
  www.sbaa.org/

• ASBAH - Association for Spina Bifida and Hydrocephalus
  www.asbah.org/

• Children with Spina Bifida: A Resource Page for Parents
  www.waisman.wisc.edu/~rowley/sb-kids/

• International Federation for Hydrocephalus & Spina Bifida
  www.ifglobal.org/

Spinal issues

• In-depth information to help patients understand, prevent and seek appropriate treatment for back and neck pain-written and reviewed by leading spine physicians
  www.spine-health.com

Sturge-Weber Syndrome

• Indicated at birth by seizures accompanied by a large port-wine stain birthmark on the forehead and upper eyelid of one side of the face
  www.sturge-weber.org/index.php?option=com_content&view=article&id=55&Itemid=17

• Information provided by the National Institute of Neurological Disorders and Stroke
  www.ninds.nih.gov/disorders/sturge_weber/sturge_weber.htm

Syndactyly

• Failure of fingers to separate into individual appendages
  www.emedicine.com/orthoped/topic563.htm

• Brief summary provided by Bethany Kids
  www.bethanykids.org/Syndactyly.htm

• Informational outline of the disorder
  www.fpnotebook.com/Nicu/Ortho/Syndctyly.htm

Tetralogy of Fallot - Heart Defect

• Congenital heart defect
  www.tefvater.org/heart/tof/historytetoflow.html

• Information and illustrations on ToF
  www.heartpoint.com/congtetralogy.html

Thalassemia

• Most common inherited single gene disorder in the world, fatal pediatric disease if not treated promptly
  www.thalassemia.com

• Information provided by Cooley's Anemia Foundation for patients and their families
  www.thalassemia.org

• An overview of Thalassemia for parents adopting internationally
  www.comeunity.com/adoption/health/thalessemia.html

Torticollis (stiffening of neck/check muscle)

• Information by Dr. Hull, Torticollis is a deformity of the neck
  www.drhull.com/EncyMaster/T/torticollis.html

*Up to date as of 03/09/10

Back to Medical Resources

The information included on this site is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult a healthcare provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan. You assume full responsibility for how you choose to use this information. Nothing contained in these topics is intended to be used for medical diagnosis or treatment.