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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 youth group meet four times a year - three day events, (Easter, Halloween and Christmas) and also a 3-day summer camp, held in August.

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 Youth Committee

Members of the HDANI Youth Committee will be known as HDANI Youth Ambassador’s they are responsible to the CEO of HDANI and will report to the Fundraising and Events Officer. Youth Ambassador’s will assist in designing, planning, fundraising and organising youth events under the guidance of the Events and Fundraising Officer and with the help of HDANI staff and volunteers.

In return HDANI can offer the following:

o   An opportunity to shape and lead a service that matters to you

o   A chance to develop personal and team skills

o   Improve self confidence

o   An ability to make a real difference to the lives of others

o   Take part in activities and support sessions on planned events

o   Be part of a caring, supportive, non-judgemental environment

o   Encouragement to work to the best of your ability

If you are interested in joining the Youth Committee please contact Ashley for an application form, 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 page where you will find all youth events photos etc

Facebook Youth Page: HDANI Youth Facebook Page

Facebook main page: HDANI Facebook Page

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