1800 244 735

About Us

Huntington’s NSW ACT develops and runs support and educational programs for people affected by Huntington’s disease. We are an incorporated, not-for-profit organisation governed by a Board elected annually by our members. For more information about our Board and governance, please click here.

We are licensed to raise funds for charitable purposes in New South Wales (Authority No: CFN13153) and the Australian Capital Territory (via ACNC). Our Australian Business Number (ABN) is 54 571 730 306, and we are endorsed by the Australian Taxation Office as a Deductible Gift Recipient. Gifts of $2.00 and upwards are tax deductible in Australia. To make a donation, please click here.

The Association gratefully acknowledges continuing support from its many generous donors and supporters, including the NSW Department of Health, the St George Foundation, the Ansvar Community Education Program and the Westpac Foundation. Please see our Funding page for more information about our funding and finances.

Our Focus Areas - Information, Education, Advocacy and Awareness

Our Goals

  • Be the HD information channel for community members and care professionals within NSW and ACT
  • Ensure specialised HD education is available to HD community members and care professionals within NSW and ACT
  • Provide HD-specific support that improves the quality of life for those impacted by HD
  • Respond to the concerns and aspirations of our members through advocacy that aims to improve government policies and services within disability, health and social care and justice systems
  • Raise awareness of HD in communities where people with HD live and more broadly

Key Milestones

A graphical representation of the history of Huntington's NSW ACT

Our Advocacy


At Huntington’s NSW ACT we:

  • lobby governments to fund specialist HD social workers
  • campaign for HD specialist residential and community services in regional NSW and ACT
  • campaign for NDIS planners and providers to understand the needs of people with HD
  • campaign for appropriate care for people with HD within the justice system
Huntington's staff and supporters