How can we support you or your child through the teenage years?
We offer emotional support and the space to talk without fear of judgment. We share practical advice so that you can understand and better deal with symptoms and changes in behaviour in family members. 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.
Ways that we can support you
Local events for young people
HD Connect peer support calls run by our young people
Under 18s three day summer camp
"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."
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
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.
