Northern Genetics Service

Patient Information Sources

The following is a list of recommended external websites for Genetics patients:

 

Name of disorder

Website address

Adrenoleukodystrophy

www.aldlife.org

Agenesis of Corpus Callosum/Acardi

www.corpal.org.uk

Alpha 1 Antitrypsin Deficiency

www.alpha1.org.uk

Alström syndrome

www.alstrom.org.uk

Androgen Insensitivity Syndrome

www.aissg.org

Angelman’s syndrome

www.angelmanuk.org

Antenatal Results and Choices

www.arc-uk.org

Arthrogryposis

www.tagonline.org.uk

Ataxia (Cerebellar and Friedrichs)

www.ataxia.org.uk

Ataxia Telangiectasia

www.atsociety.org.uk

Autism and Aspergers Syndrome

www.nas.org.uk

Barth Syndrome

www.barthsyndrome.org.uk

Batten Disease

www.bdfa-uk.org.uk

Bereavement

www.tcf.org.uk

Birth Defects

www.birthdefects.co.uk

Cardiomyopathy

www.cardiomyopathy.org

Charcot Marie Tooth Disease

www.cmt.org.uk

Chronic Granulomatous Disorder

www.cgd.org.uk

Coffin Lowry Syndrome

www.clsf.info

Congenital Adrenal Hyperplasia

www.cah.org.uk

Contact a Family (CAF)

www.cafamily.org.uk

Cornelia De Lange

www.cdls.org.uk

Costello

costellokids.co.uk

Craniofacial

www.headlines.org.uk

Cri du Chat

www.criduchat.co.uk

Cystic Fibrosis

www.cftrust.org.uk

Deaf

www.ndcs.org.uk

Di-George Syndrome 22q11.2 del

www.maxappeal.org.uk 

Down’s Syndrome

http://www.dsne.org.uk 

Ectodermal Dysplasia

www.ectodermaldysplasia.org.uk

Ehlers Danlos

www.ehlers-danlos.org

Epidermolysis Bullbosa

www.debra.org.uk

Epilepsy

www.epilepsysociety.org.uk

Fetal Alcohol Syndrome

www.nofas-uk.org

Fragile X Syndrome

www.fragilex.org.uk

Gauchers Disease

www.gaucher.org.uk

Genetic Alliance

www.geneticalliance.org.uk

Genetic Haemochromatosis

www.haemochromatosis.org.uk

Haemophilia

www.haemophilia.org.uk

Hereditary Haemorrhagic Telangiectasia

www.telangiectasia.co.uk

Holt Oram

www.cafamily.org.uk

Huntington’s Disease

www.hda.org.uk

Hydranencephaly

www.hydranencephaly.com

Hypermobility

www.hypermobility.org

Infertility

www.fertilityfriends.co.uk

Insurance Association of British Insurers

www.abi.org.uk

Kabuki Syndrome

www.kabukiuk.com

Klinefelters Syndrome

www.ksa-uk.net 

Laurence-Moon-Bardet-Biedl Syndrome

www.lmbbs.org.uk

Lissencephaly

www.ninds.nih.gov

Macmillan Cancer Support

www.macmillan.org.uk

Maggie’s Centre

www.maggiescentres.org

Marfan’s

www.marfantrust.org

Medic Alert

www.medicalert.org.uk

Metabolic Disorders

www.climb.org.uk

Miscarriage

www.miscarriageassociation.org.uk 

Mucopolysaccharide Diseases

www.mpssociety.co.uk

Multiple Endocrine Neoplasia

www.amend.org.uk

Muscular Dystrophies

www.muscular-dystrophy.org

Myasthenia Gravis

www.mga-charity.org

Neural Tube Defects:

www.shinecharity.org.uk 

Neurofibromatosis

www.nfauk.org.

Neuromuscular Network

www.FKRP-registry.org

Niemann-Pick Disease

www.niemannpick.org.uk

Noonan Syndrome

www.noonansyndrome.co.uk

Pathways

www.pathways4all.co.uk

Phenylketonuria

www.nspku.org

Porphyria

www.porphyria.org.uk

Prader-Willi Syndrome

www.pwsa.co.uk

Primary Cilia Dyskinesia

www.pcdsupport.org.uk

Progressive Supranuclear Palsy

www.pspeur.org

Restricted Growth

www.restrictedgrowth.co.uk

Retinoblastoma

www.chect.org.uk

Rubenstein Taybi

www.rtsuk.org

Sudden Arrhythmic Death Syndrome

www.sadsuk.org

Scoliosis

www.sauk.org.uk

Sickle Cell

www.sicklecellsociety.org

SOFT (T13 and T18)

www.soft.org.uk

Spina bifida and Hydracephalus

www.shinecharity.org.uk 

Shwachman Diamond

www.tedsgang.co.uk

Steps

www.steps-charity.org.uk

Sticklers

www.stickler.org.uk

Sudden Infant Death

www.fsid.org.uk

Syndromes Without A Name (SWAN)

www.undiagnosed.org.uk

Tay Sachs

www.ntsad.org

Thalassaemia

www.ukts.org

Tracheo Oesophageal Fistula

www.tofs.org.uk

Tuberous Sclerosis

www.tuberous-sclerosis.org

Turners Syndrome

www.tss.org.uk 

Usher’s syndrome

www.sense.org.uk

Unique

www.rarechromo.org

VHL

www.vhl.org

Williams syndrome

www.williams-syndrome.org.uk

 


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