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A

Aicardi syndrome

• National Library of Medicine: Aicardi syndrome
• Aicardi syndrome family website
• Contact a Family: Aicardi syndrome

Alport syndrome

• EdREN, the website of the Renal Unit of the Royal Infirmary of Edinburgh
• National Library of Medicine: Alport syndrome
• National Kidney Federation website

Alström syndrome

• Alström Syndrome UK - Support Group
• Alstrom Syndrome International

Apert syndrome

• National Library of Medicine: Apert syndrome
• Teeter's page - personal homepage about Apert syndrome

B

Bardet-Biedl syndrome

• Contact a Family: Bardet-Biedl Syndrome
• Laurence-Moon-Bardet-Biedl Society
• Scottish Sensory Centre: Bardet-Biedl Syndrome

Batten disease

• National Library of Medicine: Batten disease
• Contact a Family: Batten disease
• BDFA - Batten Disease Family Association

C

CHARGE syndrome

• Sense: CHARGE syndrome
• The CHARGE Family Support Group
• CHARGE Syndrome Foundation

Chromosome 18

• The Chromosome 18 Registry & Research Society

Cockayne syndrome

• Contact a Family: Cockayne Syndrome
• National Library of Medicine: Cockayne Syndrome
• Cockayne Syndrome Network

Cogan’s syndrome

• Contact a Family: Cogan's syndrome
• Orphanet: Cogan's syndrome

Congenital rubella syndrome

• Department of Health: Rubella resources
• Orphanet: Congenital Rubella Syndrome
• Sense: Congenital rubella syndrome

Cornelia de Lange syndrome (CdLs)

• Contact a Family: Cornelia De Lange Syndrome
• CdLS Foundation (USA)
• CdLS Foundation (UK)

Craniosynostosis (Aipert, Crouzon and Pfeiffer)

• National Library of Medicine: Craniosynostosis
• NHS Choices: Craniosynostosis

Cri du chat syndrome

• Contact a Family: Cri du chat syndrome
• Cri du Chat Syndrome Support Group
• National Library of Medicine: Cri du chat syndrome

Cytomegalovirus (CMV)

• National Library of Medicine: Cytomegalovirus
• CMV Action

D

Dandy-Walker syndrome

• Contact a Family: Dandy-Walker syndrome
• NINDS Dandy-Walker Syndrome Information
• Dandy-Walker Alliance

DIDMOAD (Wolfram syndrome)

• National Library of Medicine: Wolfram Syndrome
• Worldwide Society of Wolfram Syndrome Families
• UK Wolfram Syndrome Support Group

Down syndrome

• Texas School for the Blind and Visually Impaired: Down syndrome
• Down Syndrome Association

F

Flynn Aird syndrome

• National Institutes of Health: Flynn Aird syndrome

Foetal Alcohol syndrome

• National Library of Medicine: Foetal Alcohol syndrome
• Contact a Family: Foetal Alcohol syndrome

Friedreich’s Ataxia (also known as Spinocerebellar degeneration)

• Contact a Family: Friedrich's Ataxia
• Ataxia UK

G

Goldenhar syndrome

• Contact a Family: Goldenhar syndrome
• Goldenhar Syndrome Support Network

K

Kearns-Sayre syndrome

• National Institutes of Health: Kearns-Sayre syndrome
• Medlink: Kearns-Sayre Syndrome

Kniest dysplasia

• Kniest SED Group
• National Library of Medicine: Kniest dysplasia

M

Marfan syndrome

• National Library of Medicine: Marfan syndrome
• Contact a Family: Marfan syndrome
• National Marfan Foundation

Marshall syndrome

• Orphanet: Marshall syndrome
• Healthline: Marshall Syndrome

Marshall-Smith syndrome

• Marshall-Smith Syndrome Research Foundation
• National Institutes of Health: Marshall-Smith Syndrome

Meningitis (viral and bacterial)

• Texas School for the Blind and Visually Impaired: Meningitis
• Meningitis UK
• Meningitis Trust

Metachromatic leukodystrophy (MLD)

• National Library of Medicine: Metachromatic leukodystrophy
• MLD Foundation

Moebius syndrome (also known as Möbius syndrome)

• National Institutes of Health: Moebius syndrome
• Moebius Syndrome Foundation

Mohr-Tranebjaerg (also known as Deafness-Dystonia-Optic Neuronopathy syndrome)

• National Library of Medicine: Mohr-Tranebjaerg

N

Neurofibromatosis Type 2

• National Library of Medicine: Neurofibromatosis Type 2
• The Neuro Foundation UK
• NHS Choices: Neurofibromatosis Type 2

Norrie disease

• National Library of Medicine: Norrie disease
• Norrie Disease Association
• Scottish Sensory Centre: Norrie Disease

P

Pallister Killian mosaic syndrome

• Contact a Family: Pallister Killian mosaic myndrome
• National Library of Medicine: Pallister Killian mosaic syndrome

Peroxisomal disorders (including Refsum Disease, Zellweger syndrome and Infantile Adrenoleukodystrophy)

• Medscape: Peroxisomal disorders
• National Institutes of Health (Refsum)
• National Institutes of Health (Zellweger)
• National Library of Medicine (Adrenoleukodystrophy)

Pierre-Robin syndrome

• National Library of Medicine: Pierre-Robin syndrome
• Pierre-Robin Network
• Contact a Family: Pierre-Robin syndrome

S

Stickler syndrome

• National Library of Medicine: Stickler syndrome
• Contact a Family: Stickler syndrome
• Stickler Syndrome Support Group

Sturge-Weber syndrome

• National Institutes of Health: Sturge-Weber syndrome
• Sturge-Weber Foundation (UK)
• Contact a Family: Sturge-Weber syndrome

T

Treacher Collins syndrome

• National Library of Medicine: Treacher Collins syndrome

Trisomy 13 (also known as Patau syndrome)

• National Library of Medicine: Trisomy 13
• Living with Trisomy 13
• S.O.F.T. (UK)

U

Usher syndrome

• National Institutes of Health: Usher syndrome
• National Institute on Deafness and other Communication
• Sense: Usher syndrome
• The Coalition for Usher Syndrome Research

W

Waardenburg syndrome

• National Library of Medicine: Waardenburg syndrome
• Contact a Family website: Waardenburg syndrome
• Information from Rare Disorders (NORD): Waardenburg syndrome

Wildervanck syndrome

• University of Arizona: Wildervanck syndrome
• National Institutes of Health: Wildervanck syndrome

Wolf-Hirschhorn syndrome (Trisomy 4p)

• National Library of Medicine: Wolf-Hirschhorn syndrome
• Wolfhirschhorn.org
• 4p- Support Group

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