Our Youth Engagement Service - HDYES works with young people whose families are affected by Huntington’s or they are affected by Juvenile Huntington's disease.


HDYES is a confidential service is 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:

  • Provide a non-judgemental ear if you just want someone to talk to

  • Provide one-to-one and/or group support sessions

  • Help you with talking to school, college, benefits departments or other agencies

  • Help you find any additional support you need

  • Introduce you to young carers projects

Support for young people

HDYES activity day (108)

Events for young people

View events

HD Youth Voice

Inspiring blogs and stories

View stories


Videos for young people

View videos

Meet our Youth Workers

James - Huntington's Disease Association


Team Leader and Specialist Youth Worker (North of England)

0142 2411466

07718 424905


Jack - Huntington's Disease Association


Youth Worker (South West of England inc South and Mid Wales)

0117 2449487

07749 493663


Ian - Huntington's Disease Association


Youth Worker (Middle of England inc North Wales)

01922 661227

07842 425831


Huntington's Disease Association


Youth Worker (South East of England)

01992 661953

07842 425830


Nadia Huntington's disease project officer


Youth Engagement Project Officer

01785 332881

07842 425829


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.

Visit the HDYO website

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.





Resources and support for young people

If you know a young person who will benefit from our services you can refer them to us using the form below.

Download the referral form

You can download our useful teenager's guide and teacher's guide below.

A teenagers guide Guides for website  2023 (7)   

You can now order our booklet for primary school-aged children by emailing info@hda.org.uk or by calling 0151 331 5444.

Follow us on social media

What you think about HDYES

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.

Year one story report

A big thank you to the National Lottery for funding this service. You can read more about this funding here.


A big thank you to the Jingle Jam for providing funding towards this service. Read about how two weeks of live streaming with Jingle Jam raised over £240,000 for children and young people.

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