Huntington’s Victoria has been supporting the community since 1973.

Throughout our long history, we would like to make sure that we recognise key milestone moments for the Huntington’s disease community.

Formation of AHDA

1973 – Huntington’s Victoria, formerly known as Australian Huntington’s Disease Association (AHDA Vic) was formed. This was the first HD association in Australia.  

Huntington's Research Group of Victoria

2004 — Establishment of the Huntington’s Research Group of Victoria (HRGV) which is the first designated research group with membership across academia and includes both clinical and community representatives.  

Huntington's Disease specific Individualised Support Packages

2007 — AHDA (Vic) was successful in receiving state government funding to implement the first HD specific Individualised Support Packages.   

Re-branding of Australian Huntington's Disease Association (VIC)

2008 — AHDA Vic re-branded and became Huntington’s Victoria.

World Congress on Huntington's Disease

2011 — Melbourne played host to the World Congress on Huntington’s Disease. This has been the only time it has been held in Australia.


2013 — Huntington’s Victoria was accredited by the Australian Council on Healthcare Standards.   

National Disability Insurance Scheme (NDIS) Pilot Program

2013 — Huntington’s Victoria became a registered National Disability Insurance Scheme (NDIS) provider and was instrumental in the NDIS Pilot Program in Barwon.

NDIS Rollout

2016 — Official rollout of the National Disability Insurance Scheme (NDIS) in Victoria.  

Celebrating 45 years of service

2018 — Huntington’s Victoria celebrates 45 years of service to its community.   

Clinical Trials

2020 — Clinical trials are underway in Melbourne.  

NDIS ILC Grant - Huntington's Community Connect

2020 — Huntington’s Victoria was awarded a national grant from the NDIS to develop an online peer-to-peer forum.

Huntington's Community Connect (HCC)

2022 — Huntington’s Community Connect national online forum was launched. This is a safe space for the community to connect and share experiences with other members of the HD community regardless of their location.

Enablement Award Adjudication

2022 — Huntington’s Victoria was adjudicated an Enablement Award for The Most Outstanding Specialist Community Organisation.