Huntington's Disease

A series of informative webinars held by the Huntington's Disease Association, often in conjunction with other organisations or leading health and social care professionals.
The webinars cover a range of topics from research and the ins and outs of Huntington's disease to hints and tips for carers.

Spiritual suffering, experiences of grief/loss, and coping strategies have not been systematically studied in HD caregivers. This review aims to provide further information on grief and loss, and coping strategies in the context of Huntington's disease.
Leidl, B. F., Fox-Davis, D., Walker, F. O., Gabbard, J., & Marterre, B. (2023). Layers of Loss: A Scoping Review and Taxonomy of HD Caregivers' Spiritual Suffering, Grief/Loss and Coping Strategies. Journal of pain and symptom management, 65(1), e29–e50. https://doi.org/10.1016/j.jpainsymman.2022.09.010

Excessive adversity in childhood can have long-term consequences on health and well-being. One group of children that may be at risk are those who grow up with a parent with Huntington’s disease (HD). Despite this, there is little knowledge about how these children are impacted by adversity. This research aimed to explore adverse childhood experiences (ACEs) of individuals who grew up with a parent with HD and their perceptions of caregiver support.
Findings suggest that children in families with HD can be exposed to a range of adverse experiences. Findings also suggest that sufficient support from a caregiver without HD can buffer or protect against negative consequences of these experiences.
Siri Kjoelaas, Tine K. Jensen & Kristin B. Feragen (2021) ‘I knew it wasn’t normal, I just didn’t know what to do about it’: adversity and caregiver support when growing up in a family with Huntington’s disease, Psychology & Health, epub

Huntington’s Australia (HA) is the peak national body dedicated to supporting individuals and families impacted by Huntington’s disease (HD) across Australia. Offering a wide range of services to improve the quality of life for those impacted by HD, including: Advocacy and awareness campaigns; Training and education for caregivers, disability support providers, allied health professionals, and other stakeholders; and Comprehensive support for individuals at every stage of their HD journey, from those at risk or newly diagnosed to those experiencing advanced symptoms.

In 2024 ACT, NSW, NT, TAS, WA, SA, & QLD merged into Huntington's Australia.
Head Office:
11 Aberdare Road, Nedlands WA 6009
State Office Locations:
NSW/ACT: 21 Chatham Road, West Ryde NSW 2114
QLD: Unit 7B, 108 Wilkie Street, Yeerongpilly QLD 4105
SA/NT: 16 Malwa St, Glandore SA 5037
TAS: 473 West Tamar Highway, Riverside TAS 7250
WA: 11 Aberdare Road, Nedlands WA 6009
Phone: 1800 244 735

The Outreach Service is part of a multidisciplinary team of medical, nursing and allied health services which provides review, intervention, treatment, case management, counselling, support, education and management of problems and issues associated with Huntington’s for patients, their families and carers.

The South Australian Huntington’s Disease Service is available statewide and is located within the Social Work & Counselling Service at Flinders Medical Centre

Assessment and case management programs. Available to patients with Huntington’s disease (HD) and their families/carers. Services and support are available throughout the course of the disease (premanifest and manifest stages). Staffed by a sessional neurologist, sessional psychiatrists, social workers, speech pathologists.

16 Wakefield Street,
Hawthorn VIC 3122
Tel (03) 9818 6333

The service at Calvary Health Care Bethlehem offers a range of multidisciplinary assessment, education and management services for people with a diagnosed PND.

Rare Voices Australia (RVA) is the national peak body for Australians living with a rare disease. RVA provides a strong, unified voice to advocate for policy as well as health, disability and other systems that work for people living with a rare disease.

The Huntington’s Disease Network of Australia (HDNA) is a project conceived of by Professor Julie Stout of Monash University. Includes information about: Research and the Map-HD registry.