Getting help

If you or someone you care about are affected by Huntington’s disease, we know it can be tough.

We’ve gathered information to help you understand the disease and the advice and support that may be available to help you live better with Huntington’s.

Find out more

If you're at risk

Huntington’s disease is caused by a faulty gene in your DNA (the biological ‘instructions’ you inherit which tell your cells what to do).

If you're showing symptoms

Although there is currently no cure, there are many ways to get help with the symptoms and challenges of living with Huntington’s disease.

If you're a carer

If you are helping someone with Huntington’s to manage daily life, you may gradually be taking on the role of ‘carer’. Many people who look after a member of their family or a partner don’t see themselves as a ‘carer’ .

If you have Juvenile Huntington's

If you think you or your child has Juvenile Huntington’s (showing symptoms before the age of 21), or you already have a diagnosis, it can feel daunting.

For children and young people

If you are a child or young person that has someone with Huntington’s in your family, this section is for you.

SHDA Service

Our Specialist Huntington’s Disease Advisory service covers England and Wales and is delivered by our team of Specialist Huntington’s Disease Advisers. All our specialist advisers are experienced and compassionate care management professionals. We understand that whole families may need our support.

Branches and support groups

Huntington’s Disease Association branches and support groups are run by volunteers. Groups meet up and down the country for a mixture of social activities, information sessions, fundraising and awareness raising – and always a good chat.