A list of website links to organisations providing support to individuals with genetic conditions and their families:
Antenatal Results and Choices (UK)
Antenatal Results and Choices provides non-directive support and information to parents throughout the antenatal testing process.
Contact a Family (UK)
Contact a Family provides support and advice to parents of children born or diagnosed with a serious disability or rare syndrome.
Genetic Alliance (UK)
Genetic Alliance UK provides information for patients and families.
Restricted Growth Association (UK)
The Restricted Growth Association provides information and support for people with restricted growth.
Unique: Rare Chromosome Disorder Support Group (UK)
Unique is a source of information, mutual support and self-help to families of children with any rare chromosome disorders.
Alstrom Syndrome UK
The Alstrom Syndrome UK provide support to people with this very rare, hereditary disorder and their carers.
Cardiomyopthy Association (UK)
The Cardiomyopthy Association provides information on the main forms of the heart muscle disease known as Cardiomyopathy.
Down’s Syndrome Association (UK)
The Down’s Syndrome Association provide information, counselling and support for people with Down’s syndrome, their families and carers.
Down’s Syndrome Scotland
Down’s Syndrome Scotland is a membership organisation to support people with Down’s Syndrome in Scotland and their families.
Gauchers Association (UK)
The Gauchers Association aims to keep families with this inherited, enzyme deficiency, disorder in touch for support.
Huntington’s Disease Association (UK)
The Huntington’s Disease Association exists to support people affected by the disease and to provided information and advice to professionals whose task it is to support Huntington’s disease families.
Scottish Huntington’s Association
The Scottish Huntington’s Association provides information and support to those affected by this hereditary disorder.
Laurence-Moon-Bardet-Biedl Society (UK)
The Laurence-Moon-Bardet-Biedl Society supports people with this rare syndrome, their families and carers.
Marfan Association UK
Marfan Association UK provides information and support to people with this genetic disorder of the connective tissue.
Muscular Dystrophy Campaign (UK)
The Muscular Dystrophy Campaign is the only UK charity focusing on all muscular dystrophies and allied disorders.
Polyposis Registry (UK)
The Polyposis Registry provides information about Familial Adenomatous Polyposis, an inherited condition which mainly affects the large intestine.
Prader-Willi Syndrome Association (UK)
The Prader-Willi Syndrome Association (UK) supports people and families affected by this chromosomal disorder.
S.O.F.T UK
S.O.F.T UK provide support to families affected by Edward’s Syndrome, Patau’s Syndrome and related disorders.
Stickler Syndrome Support Group (UK)
The Stickler Syndrome Support Group provides support to people with this genetic progressive condition.
Tuberous Sclerosis Association (UK)
The Tuberous Sclerosis Association is the UK charity that supports sufferers, promotes awareness, and seeks the causes and best possible management of Tuberous Sclerosis.
Worster-Drought Syndrome Support Group (UK)
The Worster-Drought Syndrome Support Group, providing support to people with this condition which is a form of cerebral palsy.
