Welcome to Huntington's NSW & ACT

Latest News

Genetic Testing - Life Insurance Moratorium

The Moratorium on Genetic Tests in Life Insurance came into effect from 1 July 2019 and will end on 30 June 2024. This means that from 1 July 2019, there will be a temporary suspension on the use of genetic test results as part of an insurance application up to the value of $500,000 (for death and total permanent disability), $200,000 for trauma and $4,000 a month for income protection.

(Note - in the UK the limit is 500,000 pounds sterling, a lot more than our AUD$500,000.)


The Huntington Disease Service at Westmead Hospital has been approved to participate in a new drug trial, called Generation HD1. This study tests a Huntingtin-lowering (also known as gene silencing) agent developed by IONIS, and the trial will be run by a company called Roche. The study involves lumbar punctures, MRI scans, assessments and questionnaires.

Upcoming Events

Community Support groups meeting in August

Support Groups

PORT MACQUARIE - Friday 2nd, 11:00am-1:00pm, Westport Club, 25 Buller Street
ACT lunch - Saturday 3rd, from 12:30pm, Ainslie Football Club 
WOLLONGONG - Monday 5th, 10:00am, Wollongong Golf club, 151-161 Corrimal St, Wollongong
COFFS HARBOUR - Friday 16th, 11:00am-01:00pm, Joyland Carers Retreat,  5B Breakers Way, Korora

Carers Groups

NEWCASTLE - Thursday 8th, 10:00am-12:00pm, Jesmond Neighbourhood Centre, 44 Mordue Parade
CENTRAL COAST - Saturday 24th, 10:00am, Loo Loos Warehouse, 12/11 Cochrone St, Kincumber
WEST RYDE - Wednesday 24th, 10:30am-12:30pm, 21 Chatham Road, West Ryde

For further details about any of these meetings contact us on 9874 9777 or email: info@huntingtonsnsw.com.au.

Have a High Tea 4 HD


What a great way to raise awareness of HD and funds to support our vulnerable community. A one-off registration. Huntington's NSW & ACT will send you a pack including 6 invitations, 6 pins and some recipe tips.

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