Genetic Alliance UK - Member Organisations

The Genetic Alliance UK is a national alliance of organisations with a membership of 160 charities which support children, families and individuals affected by genetic disorders. Membership application details can be sought by contacting Genetic Alliance UK. If you would like to advertise your charity through this web presence, contact Genetic Alliance UK.

At the bottom of the page there are also links to other patient support organisations who aren't eligible for Genetic Alliance UK membership but that we work closely with.

Genetic Alliance UK Members Alphabetical Index


Action Duchenne

Action for Sick Children (Scotland)

Action on Gilbert's Syndrome

Adrenal Hyperplasia Network

Advocacy for Neuroacanthocytosis Patients

aHUSUK (atypical Haemolytic Uraemic Syndrome)

Albinism Fellowship

(support group for those affected by adrenoleukodystrophy and adrenomyeloneuropathy both personally or medically)

Alkaptonuria Society

Alpha 1 Awareness UK

Alstrom Syndrome UK

Annabelle's Challenge

Amy and Friends (Cockayne Syndrome Support)

AMEND - Association for Multiple Endocrine Neoplasia Disorders

Androgen Insensitivity Syndrome Support Group(AISSG)

Aniridia Network

Anorchidism Support Group (ASG)

Antenatal Results and Choices (ARC)

Anthony Nolan

The Arthrogryposis Group (TAG)

(the Angelman Syndrome Support Education and Research Trust)

The Association for Glycogen Storage Diseases (UK)

Ataxia - Telangiectasia Society

Ataxia UK

Baby James' Starlight Trust

Barth Syndrome Trust

Batten Disease Family Association

Beckwith-Wiedemann Support Group

Behcets Syndrome Society

BRCA Umbrella

Breathtakers Charity
(Supporting sufferers of Obliterative Bronchiolitis and other Rare Lung Disease)

British Heart Foundation

The British Porphyria Association

British Retinitis Pigmentosa Society

The Brittle Bone Society

Cancer Research and Genetics UK

Cardiomyopathy Association

CareWatch (Brent)

55 Townsend Ln, London NW9 8TP

Telephone: 020 8205 4862

The Cavan Tommy Hoey Trust (Ireland)
(for people affected by XLP, HLH, EBV)

Cavernoma Alliance UK 

CDLS Foundation
(Cornelia De Lange Syndrome)


CGD Society
(Chronic Granulomatous Disorder)

ChILD Lung Foundation
(For families and individuals affected by children's Interstitial Lung Disease)

Childhood Eye Cancer Trust (CHECT)
(For families and individuals affected by retinoblastoma)

The Children's Mitochondrial Disease Network

Cilliopathy Alliance

Chromosome 18 Registry and Research Society

CML Support (chronic myeloid leukaemia support group)

CMT United Kingdom
(Charcot-Marie-Tooth Disease)

The Cogent Trust
c/o Dr Colin Steward, The Bristol Royal Hospital for Children, Paul O'Gorman Building, Upper Maudlin Street, Bristol, BS2 8BJ
Telephone: 0117 923 0000 (switchboard)

Cohen Syndrome Support Group
Wall Grange, Berry Head Road, Brixham Devon TQ5 9AG
Telephone: 01803 883638

Confer - Scotland

Congenital Adrenal Hyperplasia Support Group

Costello Syndrome Support Group

Cri Du Chat Syndrome Support Group

Cure and Action for Tay-Sachs (CATS Foundation)

The Cystic Fibrosis Trust

(National charity for Epidermolysis Bullosa EB)

Diamond Blackfan Anaemia UK Support Group

Down's Heart Group

Dravet Syndrome UK

Duchenne Family Support Group

Dyskeratosis Congenita Society
Professor I. Dokal, Academic Department of Paediatrics, Institute of Cell and Molecular Science, Barts and the London, School of Medecine and Dentistry, 4 Newark Street, London E1 2AT
Telephone: 0207 8822205 Fax: 0207 8822195

East London Branch Sickle Cell Society
Dr E C Opara-Mottoh, 88 Windon Road, London E7 0QY
Telephone: 0208 5196302 Fax: 0208 5796302

Ectodermal Dysplasia Society

Ehlers-Danlos Support UK

The Familial Alzheimer's Disease Support Group

Fanconi Hope Charitable Trust

FAP Gene
(Familial Adenomatous Polyposis and Gardners Syndrome)

FSH Muscular Dystrophy Support Group
The Fragile X Society

Friends of Kabuki Syndrome
Telephone: 07882 917 308

The Frontotemporal Dementia Support Group (formerly, Pick's Disease Support Group)

FuchsFriends UK

Funny Lumps

Galactosaemia Support Group

Gauchers Association

Genetic Disorders UK

The George Pantziarka TP53 Trust

Gitelman and Bartter Syndrome Patient Support Group 

GIST Support UK

Gorlin Syndrome Group 


Haemochromatosis Society

Haemophilia Society

(the Craniofacial Support group)

The Hereditary Spastic Paraplegia Support Group

Hermansky-Pudlak Syndrome (HPS) Network UK

HITS Worldwide
(supporting families with neurocutaneous disorder also known as Hypomelanosis of Ito)

HME Support Group
(Hereditary Multiple Exostoses Support Group)

Huntington's Disease Association (Colchester Branch)
Mrs Joyce Kaye, 18 Chestnut Close, Gt Waldingfield, Sudbury, Suffolk CO10 0RU

Huntington's Disease Association

Huntington's Disease Association Northern Ireland (HDANI

Hungtington's Disease Specialist Service

The Hypermobility Syndrome Association

Hypermobility UK

Hypopara UK

IIH UK (Idiopathic Intracranial Hypertension)

Inherited Prion Disease Support Group

International Autistic Research Organisation, The

Ichthyosis Support Group

The Information Point for Centronuclear and Myotubular Myopathy

Jeune Syndrome Foundation

Jnetics (previously Jewish Genetic Disorders UK)

Keratoconus Self Help and Support Group

Keratoconus Society

Klinefelter Organisation (UK)

Klinefelter's Syndrome Association

Laurence Moon Bardet Biedl Society

The Lily Foundation

Lipoprotein Lipase Deficiency community

Lipodystrophy UK

LPLD Alliance

Lowe Syndrome Trust

Lynch Syndrome UK

Make Billy Smile

Making it Better - Daniel Courtney Trust
(Microvillous Atrophy support group)

Marfan Association UK

Marfan Trust

The MAX Appeal
(Di George Syndrome / VCFS and 22q11.2 deletion)

Medical Advisory Service

Mike Matters

Moebius Research Trust

Mosaic Down Syndrome UK

Motor Neurone Disease Association

Mowat-Wilson Syndrome Support Group

Muscular Dystrophy Campaign

Myotonic Dystrophy Support Group

Myrovlytis Trust
Provides information for those affected by Neonatal Alloimmune Thrombocytopenia

Narcolepsy UK

National Sickle Cell Programme
Marion B McTair, 34 Sundial Avenue, South Norwood, London SE25 4BX

The National Society for Phenylketonuria 

Nemaline Myopathy

Nephrotic Syndrome Trust

The Neuro Foundation

Niemann-Pick Disease Group (UK)

Noonan UK

Noonan Syndrome Association

Organisation for Fetal Anti-Convulsant Syndromes

(Organisation for Sickle Cell Anaemia - Reading)

Trevor Smith, 4 Kenerton Close, Calcot, Reading, Berkshire RG31 7DG

Osteopetrosis Support Trust

Paediatric Adolescent Wild-type Syndromic GIST (PAWS-GIST)

Pemphigus Vulgaris Network

Peutz Jeghers Syndrome Support Group
17 Barton Road, Harlington, Dunstable, Bedfordshire LU5 6LG
Tel: 01582 878350 Fax: 01582 878313

Pennine Lancashire Genetics Outreach Project

01254 503047; 07850488197
Boulevard Centre, Blackburn, Lancashire, BB1 1EZ

The PKD Charity
(polycystic kidney disease)

Plagiocephaly Care UK

PNH Alliance

PNH Support Group, King's College Hospital
PNH Service, Haemotology Department, King's College Hospital, Denmark Hill, London, SE5 9RS
Tel: 020 3299 1039

Prader Willi Sydrome Association UK

Primary Cilary Dyskinesia Family Support Group

Primary Immunodeficiency UK (PID UK)

PSC Support

PVNH Support and Awareness

PXE Support Group

Ragdolls UK

Rare Dementia Support

Restricted Growth Association

Reverse Rett

Ring20 Research and Support UK

RP Fighting Blindness

Rubinstein Taybi Support Group

(Sudden Arryhthmic Death Syndrome)

Save Babies Through Screening Foundation UK & Krabbe Patient Support Group

Scottish Huntington's Association


(for deafblind people)

Shwachman-Diamond UK

Sickle Cell and Young Stroke Survivors

The Sickle Cell Society

Society for Mucopolysaccharide Diseases

(Support Organisation For Trisomy 13/18 and related disorders)

Spinal Muscular Atrophy Support UK


Special Needs Jungle


Stickler Syndrome Support Group

Tar Support Group

Telangiectasia Self Help Group

The 22crew

The Thalidomide Society

Thyroid UK

TRPS Support Group UK

Tuberous Sclerosis Association

Turner Syndrome Support Society (UK)

(UK Primary Immunodeficiency Patient Support)

UK Potsies

UK Thalassaemia Society

Unique- The Rare Chromosome Disorder Support Group

Vasculitis UK (Stuart Strange Vasculitis Trust)

The Von Hippel Lindau Contact Group

Williams Syndrome Foundation Limited

The Wilson's Disease Support Group

Worster Drought Syndrome Support Group

XLP Research Trust

XP Support Group
(Xeroderma Pigmentosum)


Other Support organisations

The Arrhythmia Alliance 

Contact A Family

Council for Disabled Children

The Neurological Alliance