Patient Support : Genetic / Syndromes

Achondroplasia.co.uk

Adrenoleukodystrophy Family Support Trust

Albinism Fellowship

ALD LIFE (adrenoleukodystrophy and adrenomyeloneuropathy support)

Alkaptonuria Society

Alstrom Syndrome UK

AMN-Easier (adrenoleukodystrophy & adrenomyeloneuropathy)

Androgen Insensitivity Syndrome Support Group

Arthrogryposis Group

ASSERT - Angelman Syndrome Support Education and Research Trust

Association for Glycogen Storage Disease (UK)

ATR-X Support Group

Barth Syndrome Trust

Batten Disease Family Association

BDF Newlife (Birth Defects)

Beckwith-Wiedemann Support Group

Behcet's Syndrome Society

British Porphyria Association

British Sjögren's Syndrome Association

CCHS Support Group (Congenital Central Hypoventilation Syndrome)

Cellmark

CHARGE Family Support Group

Children's Mitochondrial Disease Network

Climb - Children Living with Inherited Metabolic

Cohen Syndrome Support Group

Congenital Adrenal Hyperplasia Support Group

Contact a Family

Cornelia de Lange Syndrome Foundation

CORPAL

Costello Kids

Cri du Chat Syndrome Support Group

Cystinosis Foundation United Kingdom

DebRA (Epidermolysis Bullosa Support)

Diamond Blackfan Anaemia Support Group

DNA Bioscience

DNA Diagnostics Ltd

Down Syndrome Education Trust

Down's Heart Group

Down's Syndrome Association

Down's Syndrome Research Foundation

Down's Syndrome Scotland

Duchenne Family Support Group

Dysautonomia Society of Great Britain

Dyschondrosteosis and Madelung Wrist Deformity

Ectodermal Dysplasia Society

Ehlers Danlos Support Group

Ellis van Creveld Foundation

Fetal Alcohol Syndrome Trust

Foetal Alcohol Syndrome Aware UK

Forensic Science Service

Fragile X Society

Friends of Landau-Kleffner Syndrome

FSH Muscular Dystrophy Support Group

Galactosaemia Support Group

Gaucher's Association

Genetic Interest Group

Glanzmann's Thrombasthenia Support Group

Goldenhar Family Support Group

Gorlin Syndrome Group

Gretton Homes

Grown Up Congenital Heart (GUCH) Patients Association

Guillain-Barré Syndrome Support Group

Headlines - The Craniofacial Support Group

HITS (UK) Family Support Network

Hughes' Syndrome Foundation

Human Genetics Commission

Huntington's Disease Association

Hyperekplexia Contact Group

Irlen Centres UK

Ivemark Syndrome Association

James Stewardson Research and Welfare Trust

Kawasaki Support Group

Klinefelter Organisation

Klinefelter's Syndrome Association

Laurence-Moon-Bardet-Biedl Society

Lennox-Gastaut Syndrome Support Group

Lissencephaly Contact Group

Little Hearts Matter

Lowe Syndrome Association

Lowe Syndrome Trust

Marfan Association UK

Max Appeal

Micro and Anophthalmic Children's Society

Microcephaly Support Group

Mosaic Down Syndrome UK

Mowat Wilson Syndrome Support Group

Muscular Dystrophy Campaign

Nail Patella Syndrome UK

NASPCS (for incontinent and stoma children)

National Reye's Syndrome Foundation

Niemann-Pick Disease Group (UK)

NSPKU - National Society for Phenylketonuria

Ohdo Syndrome Family Network

Organic Acidaemias UK

Osteopetrosis Support Trust

Paternity Company

Pelizaeus Merzbacher Disease Support Group

Pompe's Group (Association for Glycogen Storage)

Potter's Syndrome Support & Contact Group

Prader-Willi Syndrome Association (UK)

Primary Ciliary Dyskinesia Family Support Group

Primary Immunodeficiency Association

Proteus Family Network UK

PUMPA - Purine Metabolic Patients' Association

PXE International

Rett Syndrome Association of the UK

Rubinstein Taybi Syndrome Support

Scottish Huntington's Association

Sense - Usher Section

Shwachman-Diamond Support

Smith-Magenis Syndrome Foundation

Society for Mucopolysaccharide Diseases

SOFT (Support Organisation For Trisomy 18 & 13)

Stickler Syndrome Support Group

Sturge-Weber Foundation UK

Syndromes Without A Name

TAR Syndrome Support Group

Tay Sachs & Allied Disease Association

Thalidomide Society

Treacher Collins Family Support Group

Tuberous Sclerosis Association

TummyTrouble - supporting children & families with gut motility disorders

Turner Syndrome Support Society

UK Moebius Syndrome Support Group

Unique (Rare Chromosome Disorder Support Group)

Williams Syndrome Foundation

Wilson's Disease Support Group

Wolf Hirschhorn Syndrome Trust

Worster-Drought Syndrome Support Group

XLH Network











Disclaimer: Patient UK has no control of the content of the above links. Inclusion does not imply endorsement by Patient UK.

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PS - Health and Poverty

Perhaps the biggest cause of ill health in the world is poverty. Help to Make Poverty History. For example, why not lend some of your money to disadvantaged communities to enable them to trade their way out of poverty through schemes such as Shared Interest.

See also MAKEPOVERTYHISTORY North East for details and links to campaigns against poverty.

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