policy & campaigns

Genetic Alliance UK Policy is a product of the shared interests of all our member groups. Find out about our policy initiatives...


Genetic Alliance UK carries out a variety of projects focusing on issues that children, families and individuals with genetic disorders face. Find out more...


The Resources Centre houses a vast store of Publications to inform and support patients, their familties and anyone interested in Genetics and all related areas. View our list...

genetic services - uk

You can find a comprehensive list of regional Genetics Centres and Services in the Resources Centre. View the list of Centres...

Helping people with genetic conditions


Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions. We are an alliance of over 180 patient organisations.

Our aim
is to ensure that high quality services, information and support are provided to all. We actively support research and innovation across the field of genetic medicine.

Genetic Alliance UK is celebrating its 25th anniversary this year and we'd like to invite you to celebrate with us at our annual conference.

Please click here to register and see a draft copy of the day's agenda.

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Our Mission

Our mission has three main elements:

  • Supporting:
    We seek to raise awareness of genetic conditions and improve the quality of services and information available to patients and families.
  • Campaigning:
    We actively campaign on behalf of those with genetic conditions on issues of policy and practice to influence governments, policy makers, industry and care providers such as the National Health Service.
  • Uniting:
    We provide a united voice for all those affected by genetic conditions, enabling us to work together towards a common goal of making life better for patients and families at risk.



  • 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


  • 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)

  • Assert

  • 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

  • British Heart Foundation

  • The British Porphyria Association

  • British Retinitis Pigmentosa Society

  • The Brittle Bone Society

  • Cancer Research and Genetics UK

  • Cardiomyopathy Association

  • The Cavan Tommy Hoey Trust (Ireland)

  • Cavernoma Alliance UK (Formerly Angioma Alliance)

  • CDLS Foundation (Cornelia De Lange Syndrome)

  • CGD Society (Chronic Granulomatous Disorder)

  • ChILD Lung Foundation

  • Childhood Eye Cancer Trust (CHECT)

  • The Children's Mitochondrial Disease Network

  • Cilliopathy Alliance

  • Chromosome 18 Registry and Research Society

  • CML Support (chronic myeloid leukaemia support group)

  • CMT United Kingdom

  • The Cogent Trust

  • Cohen Syndrome Support Group

  • 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

  • DEBRA Diamond Blackfan Anaemia UK Support Group

  • Down's Heart Group

  • Dravet Syndrome UK

  • Duchenne Family Support Group

  • Dyskeratosis Congenita Society

  • Ectodermal Dysplasia Society

  • Ehlers-Danlos Support UK

  • The Familial Alzheimer's Disease Support Group

  • Fanconi Hope Charitable Trust

  • FAP Gene

  • FSH Muscular Dystrophy Support Group

  • The Fragile X Society

  • Friends of Kabuki Syndrome

  • 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

  • GIST Support UK

  • Gorlin Syndrome Group

  • HAE-UK

  • Haemochromatosis Society

  • Haemophilia Society

  • Headlines

  • The Hereditary Spastic Paraplegia Support Group

  • Hermansky-Pudlak Syndrome (HPS) Network UK

  • HITS Worldwide

  • HME Support Group

  • Huntington's Disease Association (Colchester Branch)

  • Huntington's Disease Association

  • Huntington's Disease Association Northern Ireland (HDANI)

  • 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

  • Jewish Genetic Disorders UK

  • Keratoconus Society Klinefelter Organisation (UK)

  • Klinefelter's Syndrome Association

  • Laurence Moon Bardet Biedl Society

  • The Lily Foundation

  • Lipoprotein Lipase Deficiency community

  • Lowe SyndromeTrust

  • Lynch Syndrome UK

  • Make Billy Smile

  • Making it Better - Daniel Courtney Trust Manchester

  • Sickle Cell and Thalassaemia Centre

  • Marfan Association UK

  • Marfan Trust

  • The MAX Appeal Medical Advisory Service

  • 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

  • Naitbabies.org

  • Narcolepsy UK

  • 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

  • OSCAR Osteopetrosis Support Trust

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

  • Pemphigus Vulgaris Network

  • Peutz Jeghers Syndrome Support Group

  • The PKD Charity

  • Plagiocephaly Care

  • UK PNH Alliance

  • 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

  • Restricted Growth Association

  • Reverse Rett

  • Ring20

  • Research and Support UK

  • RP Fighting Blindness

  • Rubinstein Taybi Support Group


  • Save Babies Through Screening Foundation UK & Krabbe Patient Support Group

  • Scottish Huntington's Association

  • Sense

  • Shwachman-Diamond UK

  • Sickle Cell and Young Stroke Survivors

  • The Sickle Cell Society

  • Society for Mucopolysaccharide Diseases


  • Spinal Muscular Atrophy

  • Support UK

  • Sparks

  • 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)

  • UKPIPS UK Potsies UK Thalassaemia Society

  • Unique- The Rare Chromosome Disorder Support Group

  • Vasculitis UK

  • 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