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.group/albinism_international/

Amniotic Banding

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

• 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/

Anal Artresia

• Missing or displaced anal opening
  www.ehendrick.org/healthy/000068.htm

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

Anorectal malformations

• Including imperforate anus
  www.pullthrough.org

Blindness/vision impairment

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

Birth Defects

• Birth Disorder Directory
  ulls up links for any birth defect
  www.bdid.com/

• Genetic Disorder Index
  Information on the Internet about Genetic Disorders and Birth Defects
  www.icomm.ca/geneinfo/index.html

Cleft Lip/Palate

• 51 pages by WA state describing intervention by age
  www.cshcn.org/forms/CLP5-03.pdf

• Comprehensive site by Cleft Advocate
  www.cleftadvocate.org

• Family Support Website
  www.cleft.org/

• Comprehensive resource provided by Wide Smiles
  www.widesmiles.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/

• Comprehensive directory for information on dwarfism, provided by the Ability Organization
  www.ability.org.uk/dwarfism.html

• Organization dedicated to dwafism
  www.dwarfism.org/

• Dwarfism/Nanism - What is it?
  www.lprf.org/dwarfism.html

Ectrodactaly

• Congenital defect involving a complete or partial absence of one or more digits
  www.bdid.com/ectrodactyly.htm

• Ectrodactaly Definition
  www.icomm.ca/geneinfo/ectodact.htm

• 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.iga.org.uk/servlet/dycon/iga/iga/live/en/uk/Home

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

Heart Defects

• Heart defect resources provided by the Methodist Hospital
  www.methodisthealth.com/health/heart/congent.htm

• 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

• Includes links to charts, X-rays, and results of other tests for nearly every known heart defect-Comprehensive visual site provided by the University of Kansas Medical Center
  www.kumc.edu/kumcpeds/cardiology/chdefect.html

Hemifacial Microsomia

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

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
  www.hepatitisctreatment.net/hep-b.htm

Hypospadias

• Hypospadias and Epispadias Association (HEA)
  www.hypospadias.net/

• 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.amp-info.net/childamp.htm

Microtia (Closed ear canal)

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

• 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/accredited/usa/us.htm

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/cache/1838809101.htm

• Comprehension information on RCH specifically written for a lay audience
  www.leeds.ac.uk/handsurgery/chcvater.htm

Rectal deformities

• Imperforate Anus,Anal Atresia,Anal Membrane,Anal Stenosis,Anorectal Malformations,Ectopic
  www.icomm.ca/geneinfo/imperfanus.htm

Scoliosis

• Scoliosis treatment
  www.scoliosisrx.com

• Scoliosis Treatment Advanced Recovery System
  scoliosis.com

• 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.com/aboutsws.htm

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

• Contains image of a CAT scan of affected patient and brief summary
  radlinux1.usuf1.usuhs.mil/rad/home/cases/sw_dis.html

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.html

• Informational outline of the disorder
  www.fpnotebook.com/NIC75.htm

Tetralogy of Fallot - Heart Defect

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

• Searchable overview of ToF
  health.discovery.com/encyclopedias/63.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 06/28/2005

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