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News articles

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.

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.

HD News Autumn 2021

Published date: 22 March, 2021

Read our Autumn edition of HD News.
young board members

We are recruiting a Huntington’s Social Worker for the ACT

Published date: 10 March, 2021

Huntington's NSW ACT is excited to announce that we are creating a new part-time position of Huntington's disease (HD) Social Worker, based in Canberra, ACT.

Huntington’s Social Worker for ACT and region

Published date: 11 February, 2021

Huntington’s NSW ACT wins grant from not-for-profit organisation The Co-Group to fund a part-time social worker position for Canberra and surrounding areas of NSW for the next three years We are most grateful to The Co-Group, a workforce solutions business which channels its surplus into benevolent causes. The funding will support a part-time Huntington’s disease ... Read more

Neurological Alliance Australia Position Statement on Aged Care – Dec 2020

Published date: 13 January, 2021

Huntington’s NSW ACT is a member of the Neurological Alliance Australia on behalf of all State Associations. This Position Statement on Aged Care comes with an important reminder that over half of those with HD living in residential care are in aged care homes.

The Year That Was….

Published date: 8 December, 2020

As we approach the end of the year and the Christmas holidays we are all a little unsure whether we will be getting together with family members and loved ones to share the festive season in the way we always do. One thing we can be sure of is that we will look back on ... Read more