About Us

Huntington’s Victoria (HV) is a not-for profit organisation that was formed by several Huntington’s disease (HD) community members in 1973 to provide a safe, trusted space to receive support. Since this time, it has continued to evolve from a community-run entity into a professionally-run organisation. The community-focused collaborative nature of the organisation, in association with the complex nature of the disease, has inevitably led to Huntington’s Victoria being the first point of contact for those seeking support.

HV is the only specialist service in Victoria that supports and assists people impacted by HD. We aim to improve the quality of life for all people touched by HD in Victoria by connecting families to the vital support and services they need.

Huntington’s Victoria provides access to expert staff that assist in the navigation of the disability service sector, provide relevant information and connect people with respite and support services. We also work with Australian and global healthcare professionals, disability service providers and academics to increase awareness and understanding of HD, as well as the impact it has on individuals, families and communities.

We aim to improve the quality of life for all people touched by HD

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Our Mission

To sustain a high quality of life for people affected by Huntington’s disease, their carers and their family, while encouraging research towards a cure.

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Our Vision

All people affected by HD live meaningful and hopeful lives as valued members of the community with equitable and timely access to resources and empowered choices for care and support of the highest quality.

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Our Priorities

Service Delivery, Information, Advocacy, Research and Sustainability.

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Our Values

  • Integrity in all behaviours
    At HV, integrity underpins all behaviours. The Board, Executive Leadership and staff at HV act in respectful, fair and ethical manner when interacting with the HD community and each other. In fulfilling the commitments of professionals and employees, the HV leadership and staff uphold the highest degree of dignity, equity, honesty and trust.
  • Accountability for all actions
    From top down, everyone at HV is accountable and accepts professional responsibility for decisions and actions. The Board, Executive Leadership and staff strive to deliver responsive and relevant services to the HD community within the resources available. Pride, enthusiasm and dedication underpin all actions at HV.
  • Collaboration with partners
    HV recognises the diverse skills and experiences of partners within and outside the health and disability sectors. Consultations with our stakeholders inform HV directions and activities, and work is approached as a team activity. The Board, Executive Leadership and staff maintain the highest professional standards when working with clients.
  • Knowledge strengthening 
    HV is committed to enhancing knowledge of HD and to a continuous development of HV across all areas. The Board, Executive Leadership and staff seek opportunities for ongoing professional development. HV supports and promotes evidence-based decisions and practice in all actions.