Sources of support

Living with JHD means facing some particular challenges, emotionally and practically, which most people don’t have to face.

It can make a big difference if you know what help is out there and get the support and information you need. It can also be hugely helpful to meet others in the same situation.

There are a number of different ways that you can access support and information:

  • Specialist Juvenile Huntington’s Disease Adviser
    Our specialist adviser for Juvenile Huntington’s, Helen Santini, is 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.
  • Specialist Huntington’s Disease Advisors (SHDAs)
    We have people throughout England and Wales who run this specialist service - people who understand and know about Huntington’s and have backgrounds in either health or social care. They are there to support you and the person you are caring for. This could be just having someone to chat and off-load to, or it could be telling you what other support services are out there and how to access them.
    Contact your local Specialist Huntington’s Disease Adviser.
  • HDA Membership
    You can join the Huntington Disease Association. Membership is free for people with Huntington’s and their friends and families. By subscribing you will receive a twice yearly newsletter to keep you up to date with our events and research.
    Contact us if you’d like to become a member.
  • Branches and support groups
    We have branches and support groups across the country, run by volunteers who have a link to Huntington’s. They all evolve in their own way to meet the needs of the people who use them. Branches are slightly more formal than support groups, as they have a committee, but the main aim of both is to bring together people who are affected by Huntington’s.
    Contact us for details of Huntington’s Disease Association branches or groups in your area.
  • Message board
    Our association has an online message board where you can find support from people in similar situations. You can also share information and ideas. This is a great way of getting support if you find it difficult to get to a group or if you prefer to remain anonymous.
  • Events
    We run weekends for families affected by Juvenile Huntington’s, which offer practical advice as well as an opportunity to meet other families in a similar situation. Please contact us for more information. Each year we hold an AGM and family weekend for people of all ages. There is normally a mix of speakers and workshops. If you would like to get information about the next JHD weekend or family conference, keep an eye on our events section or contact us to register your interest.
  • Our services for younger people
    If your sibling has Juvenile Huntington’s, we can offer support. We have a dedicated youth worker for young people aged 11-22.
    See also our children and young people’s pages.
  • The Huntington’s Disease Youth Organisation
    Known as HDYO, this is an international not-for-profit organisation providing support for young people around the world affected by Huntington’s disease. You can find out more about it and get all kinds of support and information here.
  • Specialist clinics
    Across the country there are specialist clinics for Huntington’s. They all run differently, but have some of the following: genetic counsellors, neurologists, neuro-psychiatrists, specialist nurses, psychologists and therapists (e.g. physiotherapists). Some clinics also offer the option of becoming involved in research.

Living with JHD can be very difficult, for you if you have it and for your family. The right support can make a big difference and we’re here to help.