If you have Juvenile Huntington's disease

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.

Because the disease is very rare, you may find that health professionals, schools and the general public are not always aware of it or knowledgeable about it. So in addition to managing your symptoms, you may also feel isolated at times.

But there are lots of ways you can get the help and support you need at different points, and connect with other people in a similar situation - which can make a big difference.

You’ll find a lot of information about how to get help in this section.

Contact our Juvenile Huntington’s Special Adviser

We also have an experienced Specialist Adviser on Juvenile Huntington’s, Helen Santini. She will be happy to help you find what you’re looking for and answer any questions you have. You can reach her on helen.santini@hda.org.uk or 01279 507656.

Getting help and support

Getting the care you need

Young people with Juvenile Huntington’s and their families need plenty of support to help them at different stages.

Getting the most out of life

Keeping active and doing things you enjoy can help you cope with the big challenges of Juvenile Huntington’s.

Getting financial help

Caring for someone with Juvenile Huntington’s can have an impact on your finances, which can feel stressful at times.

Talking about JHD

It can be difficult to talk to people about Juvenile Huntington’s disease, it’s such a rare condition that most people haven’t heard of it.

Juvenile Huntington's disease family weekend

Our Juvenile Huntington’s Disease Family Weekend gives young people with Juvenile Huntington’s disease (JHD) and their families the unique opportunity to meet others in a similar situation, while also having a great weekend full of exciting activities. It’s also a chance for families to find out more about JHD, both from other parents and healthcare professionals with expertise in Huntington’s disease.

The whole family is welcome on the weekend, including the young person with HD, parents/carers, as well as brothers and sisters.

Take a look at our video to find out more about our JHD Family Weekend.