Huntington’s disease

If your child is affected by a medical condition or disability we can help. Call our freephone helpline on 0808 808 3555 to get information, support and advice. You can also browse our range of parent guides on aspects of caring for a disabled child in our resource library.

To meet other parents see support groups below or meet other parents online in our closed Facebook group

Please see below for reliable medical information on Huntington’s disease produced by alternative providers.

NHS website

Although alternative links have been selected with great care, Contact cannot accept responsibility for any inaccuracies or errors. Alternative information providers give details of their quality control procedures on their website, which includes review of information by a qualified medical professional.

Is there support?

Huntington’s Disease Association

Tel: 0151 331 5444
Email: [email protected]

The Association is a Registered Charity in England and Wales No. 296453. It provides information and support to families affected by Huntington’s disease, and runs local branches and groups throughout the UK.

Group details last reviewed March 2023.

Huntington’s Disease Association of Northern Ireland

Tel: 07733 935863
Email: [email protected]

The Association is a registered charity in Northern Ireland np. NIC104676, established in 1976. It offers support, information and care for families affected by the condition. It also promotes research and knowledge about the condition. It has information available and a dedicated youth officer. The Association responds to the needs of more than 240 families.

Group details last updated March 2023.

Scottish Huntington’s Association

Tel: 0141 848 0308
Email: [email protected]

The Association is a Registered Charity in Scotland No. SC010985. It provides information and support for families affected by Huntington’s disease (HD). The Association offers nine specialist HD services in Scotland, and has four specialist youth advisors. It supports a network of family branches which are run by family members for family members and provide information and peer support. 

Group details last reviewed March 2022.

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