Name of youth service or program

Huntington’s Disease Youth Engagement Service (HDYES)

Organisation providing service

Huntington’s Disease Association England & Wales

Region the service or program covers

England & Wales

Explanation of service/program

We provide an information and support service to children and young people aged between 8 to 25 who live in families affected by Huntington’s disease throughout England and Wales. This is either in person 1 to 1 at school or another venue where the young person feels comfortable and able to talk. We will normally visit the Young Person at home to explain my role and answer any questions about the support we are able to provide. This also allows the completion of any paperwork such as consent forms if the young person is under 16 and to find out more information about school etc. We also provide a signposting service to other relevant agencies such as Young Carers, Connexions etc.

If the young person prefers it support is also available over the phone or via email

How can young people & families contact/participate in the service

I can be contacted either via email: adam.cho@hda.org.uk

Telephone: 0151 705 3460 or Text 07711 044 146

I am out of the office quite a bit but I do get back in touch with people as soon as possible.

Name of youth service or program

Young Adult Conference

Organisation providing service

Huntington’s Disease Association England & Wales

Region the service or program covers

England & Wales

Explanation of service/program

The Young Adults Conference is held in February or March each year. It is an opportunity for young people to come together, listen to talks from a variety of guest speakers, get involved in workshops and generally meet other people who also have HD in the family.

The conference was held for the first time in 2009 and is constantly evolving based on the feedback that is received from participants. The young adults conference is for people aged 18-35.

The conference runs over two days and includes a social aspect allowing people to socialise as well as finding out more information.

How can young people & families contact/participate in the service

Visit the HDA website www.hda.org.uk to find out more information and to download a booking form towards the beginning of the year. There is a cost attached to the Young Adults Conference details of which are on the booking form.

Name of youth service or program

European HD Youth Camp

Organisation providing service

Huntington’s Disease Youth Organisation (HDYO)

Region the service or program covers

Europe

Explanation of service/program

We aim to hold regular (annual) European HD Youth Camps with the help of many European HD Associations. Young people impacted by HD (15-25) can attend the event, so long as their HD Association is supporting the event with us. This is a wonderful event for young people to meet others impacted by HD from all across Europe. The event is free to attend for those who get to go.

How can young people & families contact/participate in the service

For more information about the European camp please contact HDYO at info@hdyo.org