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.