Our Youth Engagement Service - HDYES works with young people whose families are affected by Huntington’s or Juvenile Huntington's disease.
About HDYES
HDYES is a confidential service for anyone aged 8-25 with Juvenile Huntington's disease or living in a family affected by Huntington's disease (including extended family such as a cousin or grandparent).
Our youth engagement service can help by:
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Provide a non-judgemental ear if you just want someone to talk to
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Provide one-to-one and/or group support sessions
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Help you with talking to school, college, benefits departments or other agencies
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Help you find any additional support you need
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Introduce you to young carers projects
If you know a young person who will benefit from our services you can refer them to us using the form below.
You are not alone
Inspiring blogs and stories
Videos for young people
How can we support you?
Huntington's Disease Youth Organisation - HDYO
The Huntington's Disease Youth Organisation - HDYO is an international non-profit organisation specifically for children and young people around the world who are affected by Huntington's disease.
You can find useful information about Huntington's disease for kids, teens, young adults and parents, including blogs, videos and research that's easy to read.
Juvenile Huntington's disease
If you have or care for someone with Juvenile Huntington’s, remember you can also contact our Specialist Juvenile Huntington's Disease Adviser, Helen Santini. Helen 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.
For parents
If you are a parent and wish to find out more about our services and events for children and young people then please sign up to the mailing list below.
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.
What happens when I turn 26?
When you turn 26, we are still here to support you. From there you will move into the young adults group where there will still be a yearly in-person event as well as online events and peer support group. You will have a local Specialist Adviser rather than a local Youth Worker so you will still be able to get as much or as little support as you need. Don't forget that there are other volunteering opportunities if you were part of HDYV and looking to continue volunteering with us.You could join our welcoming group of ambassadors or move into HD Voice
Blogs and resources from HDYES
Q&A with a Youth Worker - Professional perspective
Youth engagement service, Support
Talking with children - Professional perspective
Support, Youth engagement service
Children's workbook
We have created a workbook to help inform children about Huntington’s disease and to help them explore their feelings and ask questions. Our intention is for the workbook to be used by an adult to introduce the topic of Huntington’s disease to a child when they feel they need to understand more about it.
The workbook is not intended to be handed to a child as an information booklet or something they complete by themselves.
You can request our workbook for primary school-aged children by emailing info@hda.org.uk or by calling 0151 331 5444.
Passport and guides
We also have a teenager's guide for those looking to understand Huntington's a little more and find out how you can access more forms of advice and support.
Follow us on social media
How did HDYES help you?
When I was about 13/14 I met with the Specialist Youth Co-ordinator 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 James started he has 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.
Our funders
HDYES is our Huntington’s Disease Youth Engagement Service. Through HDYES, we support children and young people aged 8-25 who are impacted by Huntington’s disease. We also support parents and guardians. We train and educate professionals to help them get a better understanding of Huntington’s disease and better support children and young people who are affected.
HDYES is a three-year project with a total value of almost £1m. We are bringing £305,430 of existing resources to the project plus £240,925 raised by the amazing gaming community through Jingle Jam 2022. In June 2023, we received a major funding boost from The National Lottery Community Fund, securing a grant of £418,360 over three years. This is the story of what we’ve achieved in year one.
A big thank you to the National Lottery for funding this service. You can read more about this funding here.
