Huntington's Disease Association

Helping you on your Huntington's journey.

We offer emotional support and a space to talk without fear of judgment. We share practical advice so that you can understand and better cope with the symptoms of Huntington's disease. We try to be as flexible as possible and meet the needs of everyone who uses the service.

We want to remove the stigma associated with Huntington's and help families talk about it together. We also want to help you build social networks within the community. The Huntington's community is made up of friendly, caring, knowledgeable, experienced, honest and open people and we are all here for you. Remember, you are not alone.

If you are under 18 and wish to use the service then you will need a parent or guardian to refer you.

Download the referral form

Download the consent form

Ways that we can support you

"When I was about 13/14 I met with the Specialist Youth Coordinator from the Huntington's Disease Association who provided my brothers and I support while we were at school, up to my first year of university. Ever since they have been so supportive with everything, from dad moving into the care home up to now. The support has been so important whilst growing up and dealing with Huntington's disease - knowing there is someone there who will listen and completely understands makes such a difference! I am extremely lucky to have received such a high level of support from the Huntington's Disease Association."

Rebecca Hardwick - Ambassador - Consent 2022

Stories from other young people

I felt a lot less alone - Amye's story

Community stories, Youth engagement service

Why I'm supporting Odds And Socks Day - Molly's story

Awareness, Community stories, Fundraising

Climbing mountains - A story of new friendships

Community stories, Fundraising

Taking part in a kid's triathlon - Jessica's story

Fundraising, Youth engagement service

Huntington's disease at school - Lemarnie's story

Community stories

Q&A with a Youth Worker - Professional perspective

Youth engagement service, Support

Useful resources

We have created a teacher's guide that you can give to anyone at school, which explains Huntington's disease in more detail. You can find lots of information about Huntington's disease in our teenagers' guide and also from the Huntington's Disease Youth Organization.

Our panel of young people, part of HD Youth Voice created the Huntington's disease passport for young people. The passport allows you to explain how Huntington's affects you and what can help you when you're in school. You can fill this in yourself, with your family or with the help of your HDYES youth worker. This will allow anyone you share this with to understand what you might be going through and how they can help to support you better. You can download and print the one below or you can fill out this digital version

FAQs

Who can access the service?

Anyone ages 8-25 who has Huntington's in their family (including extended family such as a cousin or grandparent).

Is HDYES confidential?

Most of the time we can keep what you have said confidential. There might be times when we might need to tell someone if we think your life is in danger now or in the future.

Can anyone contact HDYES?

You can contact us directly but if you are under 16 you will need to get consent from a parent, guardian or carer. Any member of the family or a friend can contact us as well as professionals such as doctors, social workers teachers.

Can you help me speak with my teacher or employer?

Yes. We can talk to them directly, help you talk with them or even offer training in schools, to health care professionals or workplace to help them understand your needs better.