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
(email@example.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.
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.
- http://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.