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.

We welcome the statement from the Welsh Health Minister to fund the development of orphan and ultra-orphan medicines in Wales. View our response here.


On Tuesday 4th Novemeber we launched a report from our Risks and Benefits reasearch project in Brussels. Find out more about what happened here

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View More News Articles....

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 for Sick Children (Scotland)

  • Action on Gilbert's Syndrome

  • Adrenal Hyperplasia Network

  • Advocacy for Neuroacanthocytosis Patients

  • aHUSUK

  • Albinsim Fellowship


  • Alkaptonuria (AKU) Society

  • Alpha 1 Awareness UK

  • Alstrom Syndrome UK

  • Amy and Friends

  • Androgen Insensitivity Syndrome Support Group

  • Aniridia Network UK

  • Anorchidism Support Group (ASG)

  • Anthony Nolan

  • Antenatal Results & Choices (ARC)

  • Arthrogryposis Group (TAG)

  • Assert

  • Association of Multiple Endocrine Neoplasia Disorders (AMEND)

  • Ataxia - Telangiectasia Society (A-T Society)

  • Ataxia UK

  • Barth Syndrome Trust

  • Batten Disease Family Association

  • Beckwith-Wiedemann Support Group

  • Behcets Syndrome Society

  • Breathtakers Charity

  • British Heart Foundation

  • British Porphyria Association

  • Cancer Research and Genetics UK

  • Cardiomyopathy Association

  • Cavernoma Alliance UK

  • CDLS Foundation

  • CGD Research Trust

  • ChILd Lung Foundation

  • Childhood Eye Cancer Trust

  • Chromosome 18 Registry and Research Society 

  • CMT United Kingdom

  • Cohen Syndrome Support Group

  • Confer Scotland

  • Congenital Adrenal Hyperplasia Support Group

  • Costello Support Group (International)

  • Cri Du Chat Syndrome Support Group

  • DBA-UK


  • Down's Heart Group

  • Dravet Syndrome UK

  • Duchenne Family Support Group

  • Dyskeratosis Congenita Society

  • East London Branch Sickle Cell Society

  • Ectodermal Dysplasia Society

  • Ehlers-Danlos Support Group

  • The Familial Alzheimer's Disease Support Group

  • Fanconi Hope

  • FAP UK

  • Friends of Kabuki Syndrome

  • FSH Muscular Dystrophy Support Group

  • Fuchsfriends UK

  • Galactosaemia Support Group

  • Gauchers Association

  • GIST Support UK

  • Gorlin Syndrome Group

  • HAE UK

  • Haemochromatosis Society

  • Haemophilia Society

  • Headlines Craniofacial Support

  • HITS (UK) Family Support Network

  • HME Support Group

  • HPS Network UK

  • HSP Support Group

  • Huntington’s Disease Specialist Service

  • Huntington's Disease Association

  • Huntington's Disease Association Northern Ireland

  • Hypermobility East Anglia Group

  • Hypoparathyroidism (HPTH) UK

  • Ichthyosis Support Group

  • Jeunes Syndrome Foundation

  • Jewish Genetic Disorders UK

  • Keratoconus Self Help and Support Group

  • Klinefelter Organisation (UK)

  • Klinefelter's Syndrome Association

  • Laurence Moon Bardet Biedl Society

  • The Lipoprotein Lipase Deficiency Community

  • Making it Better - The Daniel Courtney Trust

  • Manchester Sickle Cell and Thalassaemia Centre

  • Marfan Association UK

  • Marfan Trust

  • 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

  • National Sickle Cell Programme

  • Nemaline Myopathy

  • Nephrotic Syndrome Trust

  • Niemann-Pick Disease Group (UK)

  • Noonan Syndrome Assocation

  • Noonan UK



  • Osteopetrosis Support Group

  • Pemphigus Vulgaris Network

  • Peutz Jeghers Syndrome Support Group

  • PID UK (Genetic Disorders UK)

  • Plagiocephaly Care UK

  • PNH Support Group King's College Hospital

  • Polycystic Kidney Disease (PKD) Charity

  • Prader Willi Syndrome Association UK

  • Primary Ciliary Dyskinesia Family Support Group

  • PVNH Support and Awareness

  • PXE Support Group

  • Ragdolls UK

  • Restricted Growth Association

  • Reverse Rett

  • RP Fighting Blindness

  • Rubinstein Taybi Support Group


  • Save Babies Through Screening Foundation UK

  • Scottish Huntington's Association

  • Shwachman-Diamond  Support UK

  • Sickle Cell and Young Stroke Survivors

  • Society for Mucopolysaccharide Diseases



  • STEPS - Association for People with Lower Limb Abnormalities

  • Stickler Syndrome Support Group

  • Tar Support Group

  • Telangiectasia Self Help Group

  • The 22 crew

  • The Association for Glycogen Storage Diseases (UK),

  • The Brittle Bone Society

  • The Cavan Tommy Hoey Trust (Ireland)

  • The Children's Mitochondrial Disease Network

  • The Cogent Trust

  • The Cystic Fibrosis Trust

  • The Fragile X Society

  • The Frontotemporal Dementia Support Group

  • The Hypermobility Syndrome Association

  • The Information Point for Centronuclear and Myotubular Myopathy

  • The International Autistic Research Organisation

  • The Jennifer Trust for Spinal Muscular Atrophy

  • The Neuro Foundation

  • The Sickle Cell Society

  • The Thalidomide Society

  • The Von Hippel Lindau Contact Group

  • Thyroid UK

  • TRPS Support Group UK

  • Tuberous Sclerosis Association

  • Turner Syndrome Support Society (UK)


  • UK Potsies

  • UK Thalassaemia Society

  • Unique - The Rare Chromosome Disorder Support Group

  • Usher Service - SENSE

  • Vasculitits UK (SSVT)

  • Williams Syndrome Foundation Limited

  • Wilson's Disease Support Group

  • Worster Drought Syndrome Support Group

  • XLP Research Trust

  • XP Support Group