1800 244 735

Helpline (02) 9874 9777

5 Days of Wellness webinars

Our partnership with GSNV provides an opportunity to get access to a week of events organised to support people in Genetic Support Groups.

Wellness Week (November 16th-20th) offers activities for Supporting the supporters.

To learn more about the FREE activities and to RSVP for one or two (or three based on availability!), please find the registration form here.

Sessions will be based on availability, and they may fill up quick!

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Latest News and Stories

PGT will be available for Huntington’s families

Published date: 18 May, 2021

Huntington’s families now have several options when considering when and how to have children. One of these options is PGD – Pre-implantation Genetic Diagnosis, sometimes known as PGT. This allows people to use IVF technology to ensure that only embryos without the HD-causing mutation are implanted, meaning that these children will grow up HD-free.

A 4000km cycle to Broome

Published date: 19 April, 2021

Erica and Bill are about to set off on a cycle to Broome. Erica will be the support driver for her partner Bill as they cover over 4000km to reach Broome in June. We are so grateful that you have chosen to fundraise for us.

OUR SUBMISSION to the Joint Standing Committee on the NDIS inquiry into Independent Assessments

Published date: 6 April, 2021

Huntington’s Associations in NSW/ACT, QLD, WA, SA/NT and TAS have partnered with other groups representing people with various neurological diseases to make a joint submission to the Joint Standing Committee on the National Disability Insurance Scheme inquiry into independent assessments under the NDIS. In summary, we do not support the introduction of independent assessments in ... Read more

WAVE PRECISION-HD clinical trials stopped

Published date: 6 April, 2021

An open letter to the Australian Huntington’s community following the 29 March 2021 press release from Wave Life Sciences: On March 29, 2021, Wave Life Sciences issued a press release regarding their PRECISION-HD clinical trials, which are ongoing in Australia and several other countries globally. The key information from the press release is that for ... Read more

An Open Letter to the Australian Huntington’s Community

Published date: 25 March, 2021

Since the news from Roche came out, Australian clinicians, state organisation leaders, and Huntington’s researchers have been meeting on teleconferences to discuss what this means for the Australian Huntington’s disease community.

Generation HD1 trial halted

Published date: 23 March, 2021

The Roche clinical trial called Phase III Generation HD1 has been halted, not by Roche, but by an independent data monitoring committee.