Medical Special Needs Resources
Medical Special Needs Resources
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
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.
