Find more information about HD

Let's start connecting locally... If you would like to access the Facebook page set up for our local HD community, please email Amanda
(atakhampton2@gmail.com). She will then invite you to the group. Since this is a private group, no posting is viewable by the public. Once you are a member of that group, you will be able to accept other members.   Huntington's is a family affair, and the support of trusted and supportive members can make a difference, as this NZ blog shows.

Katie Collins is the Youth Liason Contact for the Christchurch HD Association. Her new role with the Huntington's Disease South Island Youth group will allow her to support young people from HD families and to organise some fun events/educational sessions. You can contact Katie on katie.collins1988@gmail.com

 

Here are some useful sites further afield:

  • HDBuzz provides Huntington’s research news. Written by scientists, but in plain language.
  • Huntington's Disease Youth Organization is a voluntary organisation that provides information, education, and support. It caters for children and young people as well as parents and professionals.
  • https://en.hdyo.org/land/ Welcome to HDYO land, an interactive, colourful and fun program aimed to help children learn about Huntington’s disease 
  • A New Zealand branch of the Huntington's Disease Youth Organization can be found here. Check out their Facebook page.
  • The CHDI Foundation is the equivalent of the Michael J. Fox Foundation for Parkinson's, aiming to fund research to slow the progression of HD.
  • ENROLL-HD is an ambitious world-wide observational study of HD, to which NZBRI and our patients are contributing.