Huntington’s Victoria: Pioneering Hope and Support

Huntington’s Victoria remains a beacon of unwavering dedication and resilience for the Huntington’s disease community. As the first Huntington’s disease organisation in Australia and the third internationally, its legacy is one of pioneering spirit and an enduring commitment to its community.

Founded in 1973 a time when awareness and understanding of Huntington’s disease was almost non existent, Huntington’s Victoria emerged as a lifeline for individuals and families dealing with the challenges of this complex neurodegenerative genetic disorder.

Since its creation, Huntington’s Victoria continues to work tirelessly to not only raise awareness but also provide crucial support, resources, and a sense of belonging to those affected by Huntington’s disease regardless of their location. Through its innovative programs and educational initiatives, Huntington’s Victoria continues to lead the way in providing the community with practical strategies and support until there are available targeted treatments and eventually a cure.

What sets Huntington’s Victoria apart is its enduring collaboration with the community it serves which in turn directly informs how the organisation continues to lead the way in understanding and managing Huntington’s disease. This resilient partnership inspires hope to countless individuals and families dealing with the challenges posed by this condition.

However, Huntington’s Victoria has an ambitious vision that transcends its own existence. The ultimate goal is a world where Huntington’s disease no longer exists. It’s an aspiration that embodies an unwavering commitment to improving the lives of those impacted by the disease. Therefore, Huntington’s Victoria recognises that progress in the battle against Huntington’s disease is a collective effort. As such, the organisation actively engages with individuals, families, carers, researchers and healthcare professionals, nationally and internationally in a collaborative approach to achieving a future where the very need for this organisation ceases to exist because this debilitating condition has been eradicated.

“We aim to improve the quality of life

for all people impacted by Huntington’s disease”

Our Values


We engage others in a respectful, fair and ethical manner, fulfilling our commitments as professionals and staff. We ensure the highest degree of dignity, equity, honesty and trust. 


We show pride, enthusiasm and dedication in everything that we do. We strive for the provision of a responsible and relevant service to our clients inclusive of the appropriate utilisation of resources. We accept professional responsibility for all our decisions and actions. 


We consult and collaborate with other key stakeholders and respect the diverse knowledge and skills of our partners; working as a team we safeguard the best possible inter-professional interface with respect to client care. 


We create opportunities for education and are committed to continuous development. We enable everyone to make knowledge-based decisions  

Our Priorities

Service Delivery:   

To be the leading specialist organisation for evidence-based service delivery.


To provide nationally consistent, user-friendly information to stakeholders across a range of mediums


To advocate on behalf of Huntington’s disease clients, carers and family to ensure high quality services and research


To strengthen the connectedness of Huntington’s disease research and the Huntington’s disease community


To ensure financial stability of the organisaiton through the development of diversified programs 

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