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

Meet our youth workers

James - Huntington's Disease Association


Team Leader and Specialist Youth Worker (North of England)

0142 2411466


Jack - Huntington's Disease Association


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

0117 2449487


Sirumpa - Huntington's Disease Association


Youth Worker (South East of England)

01992 661953


Ian - Huntington's Disease Association


Youth Worker (Middle of England inc North Wales)

01922 661227


Nadia Huntington's disease project officer


Youth Engagement Project Officer

01785 332881


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

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."

Resources and support for young people

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

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

Follow us on social media

Our funders

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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