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Geboorte afwijkingen en ziektebeelden

 

Albinism

National Organization for Albinism and Hypopigmentation,

Alport Syndrome

Alport Syndrome Home Page

Anemie

Cooley Anemia (Beta Thalassemia)

Cooley's Anemia Foundation

Glucose-6-Phosphate Dehydrogenase (G6PD) Deficiency

Glucose-6-Phosphate Dehydrogenase (G6PD) Deficiency

Sickle Cell Disease

Harvard Joint Program in Thalassemia & Sickle Cell Disease.
Hertz Nazaire's Sickle Cell Disease Patient Page.
Pediatric Sickle Cell Clinic
Sickle Cell Disease in Newborns and Infants
Sickle Cell Information Center

Angelman Syndrome

Neurology.

Angel Down Under.
ANGELMAN Mailing List
ANGELPRO Mailing List
Angels Among Us ... Angelman Syndrome Information.

Anorectal Malformations

Pull-thru Network and Mailing List

Apert Syndrome

Apert Mailing List.

Teeter's Page

Arthrogryposis Multiplex Congenita

AVENUES

Ataxia-Telangiectasia

A-T Children's Project's Information System.

Biliary Atresia

Biliary Atresia & Liver Transplant Network, Inc.

Birthmarks, Hemangiomas, & Congenital Nevi

Hemangioma and Vascular Birthmarks Foundation
Nevus Outreach, Inc.

Carbohydrate-deficient Glycoprotein Syndrome

Carbohydrate-deficient Glycoprotein Syndrome
CDGS Family Network

Cerebral Palsy

Neurology.

C-PALSY Mailing List
Cerebral Palsy: A Guide for Care
Cerebral Palsy
Cerebral palsy support group
CPPARENT Mailing List
United States Cerebral Palsy Athletic Association

Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth Disease (CMTnet).
Charcot-Marie-Tooth Chat Room

CHARGE Syndrome

CHARGE Syndrome Foundation, Inc..
Chiari Malformation page
World Arnold Chiari Malformation Association. [1/10/97]

Congenital Diaphragmatic Hernia

CHERUBS, the Association of Congenital Diaphragmatic Hernia, Research, Advocacy, and Support

Cornelia de Lange Syndrome

Cornelia de Lange Syndrome Foundation, Inc.

Craniofacial Anomalies

AboutFace
American Palate-Craniofacial Association and Cleft Palate Foundation
CTTEEN Mailing List
CLEFT-TALK Mailing List
Craniofacial Anomalies
WideSmiles

Cri du Chat Syndome

Cri Du Chat Syndrome Support Group.

Cystic Fibrosis

CF-WEB
Cystic Fibrosis Foundation.
CYSTIC FIBROSIS Mailing List
CYSTIC-L Mailing List.
Sweat Chloride Test

Cystic Hygroma

The Cystic Hygroma Online Support Group.

Cystinosis

Cystinosis

Down Syndrome

Association for Children with Down Syndrome, Inc.
Bit.Listserv.Down-Syn
DOWN-SYN Mailing List.
Down Syndrome
Down Syndrome Alternative Medicine Mailing List.
Down Syndrome: Health Issues
Down Syndrome Quarterly
DOWNS-RESEARCH Mailing List
Family Empowerment Network
Growth Charts for Children with Down Syndrome
National Down Syndrome Society.
Position Statement on Atlanto-Axial Instability
UPSIDE! Down Syndrome Society

Dwarfism & Achondroplasia

Alt.Support.Dwarfism Frequently Asked Questions.
DWARFISM Mailing List.
Greenberg Center for Skeletal Dysplasias .
International Skeletal Dysplasia Registry
Little People of America
SKELDYS Mailing List

Ehlers-Danlos Syndrome

The Joint!
Ehlers-Danlos Syndrome Support Mailing List.

Epidermolysis Bullosa

Dystrophic Epidermolysis Bullosa research Association of America, Inc..
Dystrophic Epidermolysis Bullosa Research Association of Western Australia.

Familial Dysautonomia

Familial Dysautonomia.

FD-NET

Fetal Alcohol Syndrome

Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment
Fetal Alcohol Syndrome movie
Fetal Alcohol Syndrome Resource and Materials Guide
Montana Fetal Alcohol Syndrome/Effects Program

Fragile X Syndrome

Fragile X Advocate
FRAXA Research Foundation Home Page

Growth Failure/Short Stature

Heart Diseases, Congenital

Cardiology section in de Subspecialties, Medical I (A through G) page.

CliniWeb: Congenital Heart Defects.
Congential Heart Disease Information and Resources
Congenital Heart Disease Teaching Diagrams.
LQTS Mailing List,
PDHEART Mailing List,
Hypoplastic Left Heart

HLHS Mailing Listf

Tetralogy of Fallot

Tetralogy of Fallot

Ventricular Septal Defect

Ventricular Septal Defect Course

Hemophilia

Alt.Support.Hemophilia
HEMOPHILIA-SUPPORT Mailing List
National Hemophilia Foundation

Hirschsprung's Disease

American Pseudo-obstruction and Hirschsprung's Disease Society, Inc.

Hydrocephalus

Neurology en Neurosurgery.

HYCEPH-L Mailing List
Hydrocephalus Association Homepage
Hydrocephalus Support Group of Central New Jersey.

Immune Deficiencies including Severe Combined Immune Deficiency

Jeffrey Modell Foundation
SCID Homepage

 

Klippel-Fiel Syndrome [Sequence]

Klippel-Feil Syndrome Network

Lissencephaly

Lissencephaly Network, Inc.

Long Q-T Syndrome

Long Q-T Syndrome European Information Center.

Marfan Syndrome

Alt.Support.Marfan

Mitochondrial Diseases

United Mitochondrial Disease Foundation

Muscular Dystrophy

Alt.Support.Musc-Dystrophy
Australia Muscular Dystrophy Association.
Duchenne Muscular Dystrophy
Duchenne Muscular Dystrophy Center
Italian Muscular Dystrophy Association.
Muscular Dystrophy Association of Canada.
Muscular Dystrophy Mailing List

Noonan Syndrome

NOONAN-SYNDROME Mailing List

Neurofibromatosis

Neurology.

National Neurofibromatosis Foundation.
Neurofibromatosis

Phenylketonuria (PKU)

PKU News
PKU Support Group of Florida.

Prader-Willi Syndrome

The Prader-Willi Foundation on the Internet.
Prader-Willi Syndrome Association (USA).

Retinoblastoma

R-BLASTOMA Mailing List

Rett Syndrome

International Rett Syndrome Association.
RETTNET Mailing List

Rubinstein-Taybi Syndrome

Rubinstein-Taybi Syndrome

Spina Bifida (Spinal Dysraphism)

Neurology.

Allegheny General Hospital Spina Bifida Center.
Association for Awareness of Occult Spinal Dysraphism
BIFIDA-L Mailing List.
Children with Spina Bifida
Lipomyelomeningocele and Tethered Cord Syndrome Mailing List and Support Group. Lumps, Bumps, and Holes: A Primer on Occult Spinal Dysraphism.
SB-Parents Internet Mailing List
Spina Bifida Association of Western Pennsylvania.
Spina Bifida
Spina bifida support group

Spinal Muscular Atrophy

Families of Spinal Muscular Atrophy.

Stickler Syndrome

Dave Hawley's Stickler Syndrome Page.

Storage Diseases

Gaucher Disease

Gaucher Disease
Gaucher Disease: Current Issues in Diagnosis and Treatment,

Glycogen Storage Diseases

Association for Glycogen Storage Disease
GSDNET Mailing List

Leukodystrophies

Neurology.

Metachromatic Leukodystrophy
United Leukodystrophy Foundation,

Niemann-Pick Disease

Ara Parseghian Medical Research Foundation

Tourette Syndrome

Neurology.

Alt.Support.Tourette
Massachusetts Chapter of the Tourette Syndrome Association.
Tourette Syndrome Mailing List.
The Tourette Syndrome Home Page.
Tourette syndroom

Treacher Collins Syndrome

Treacher Collins Network.

Trisomies and Other Chromosomal Defects

22q and You
SOFT
Chromosome 18 Registry & Research Society

Tuberous Sclerosis

Cody & Jordan's Page
National Tuberous Sclerosis Association.
TSCTALK (Tuberous Sclerosis Complex Talk) Mailing List
Tuberous Sclerosis Association Of Great Britain.
Tuberous Sclerosis International.

Turner Syndrome

Alt.Support.Turner-Syndrom
Turner's Syndrome Society of the United States.
UK Turners Syndrome Society.

Urea Cycle Disorders

National Urea Cycle Disorders Foundation.

Vascular Malformations

Port Wine Stain Mailing List.

 

Velo-Cardio-Facial Syndrome

Velo-Cardio-Facial Syndrome Educational Foundation.

Von Hippel-Lindau Disease

Von Hippel-Lindau Disease Family Alliance

Williams Syndrome

Canadian Association for Williams Syndrome.
Williams Syndrome Association,
Williams Syndrome Information

Wolf-Hirschhorn (4P-) Syndrome

Wolf-Hirschhorn (4P-) Syndrome

X-Linked Myotubular Myopathy

X-Linked Myotubular Myopathy Resource Group

 

 

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