HDANI Youth provides support to young people aged 5-30 living in a family impacted by Huntington’s disease (HD). There are lots of different ways you can be involved with HDANI Youth:

  • Day trips
  • Summer Camp
  • Youth Mentor
  • Volunteer
  • Youth committee

If you would like to get involved, please contact ashley@hdani.org.uk.


HDANI tries to hold youth events at least four times per year, usually around school/college holidays for example Easter, Halloween, and Christmas, and also a 3-day summer camp, held in August. This depends on available staff, funding, and levels of interest from families.

Our youth events are a safe space for young people to talk about Huntington’s disease; a youth counsellor is on hand at each event to deliver age appropriate workshops with the youth members and they also take part in fun activities.

Our youth events move around Northern Ireland to try to provide access for all our young people. If you would like to be involved in our youth events, please contact ashley@hdani.org.uk.


HDANI offer a 'HDANI Youth' Facebook page, this page for children and young people affected by Huntington’s Disease in Northern Ireland.

The group is aimed at those between the ages of 13-24 (as per Facebook rules and UN definition of a youth) and relevant youth workers.

It is a place to share experiences, chat and ask questions and will until further notice be moderated by Sorcha McPhillips, CEO and Ashley Clarke, Events and Fundraising Officer of HDANI. This group should be treated in confidence unless there is reason to believe that a person is in danger from themselves or someone else, or they themselves are considered a danger to others.

To keep this space just for the young people, requests to join from parents/other adults will not be accepted. Please visit our main 'HDANI' Facebook page where you will find all youth events photos etc.

To see more videos on HD, see: https://www.youtube.com/watch?v=hzKLNeYwbM8