Huntington’s Australia – a New National Association to Support the Huntington’s Community

Abstract

ABSTRACT Huntington’s disease (HD) is a rare, progressive, neuropsychiatric disorder that is inherited. Although there are treatment options for some of the symptoms, currently there is no cure, despite much research. In addition to medical, nursing and allied health care, a person with HD needs a great deal of support. Until now, this support, for individuals and their families, has been facilitated by Huntington’s Disease Associations in each Australian state and territory. It has been a long-held dream to merge these Associations to form a national body, so as to provide better and more equitable support, increased resources, greater sustainability and create consistent educational material for everyone impacted by HD. The ultimate goal is to help people impacted by the condition live their best life. This dream is about to be realised as 5 states and 2 territories will merge to create Huntington’s Australia, planning to begin operations later this year. The journey over the last 3 years towards this dream is described in this paper.