Community resources
Explore information about Huntington’s disease, including Australian and international resources and social networking forums, through the links below.
Research websites
| HDBuzz – Huntington’s disease research news Huntington’s disease research news, in plain language, written by scientists. | |
| Enroll – Clinical research platform A collaboration between Huntington’s disease families, clinicians, and researchers to accelerate progress toward effective treatments. | |
| Huntington Study Group Huntington’s Study Group (HSG) is a world leader in facilitating high quality clinical research trials and studies. | |
| Huntington’s Disease Network of Australia Connecting people impacted by Huntington’s disease to support services and to each other. |
Living with HD
| Centrelink Commonwealth financial assistance for individuals and carers. | |
| Carer Gateway Australian Government information for carers. | |
| Carer Rights Information about carer rights, support options, and legal protections. | |
| Rare Voices – Resource Toolkit: How to access and navigate disability and other systems – Reasonable Adjustments in Healthcare: What Can I Ask For? – Rare Voices Community: Navigating air travel with rare disease disability – Rare Voices NDIS: NDIS and Rare Disease Disability – Rare Voices NDIS Checklist: Checklist for NDIS letter of support for Health Professionals | |
| Navigating your NDIS Journey How does the NDIS work and how to navigate | |
| Care Search – Palliative Care Knowledge Network – Living with life-limiting illness – Caring for someone with life-limiting illness – Finding services and support – Palliative care support for patients, carers, and families – Grief and loss – At the end |
Youth
| Huntington’s Disease Youth Organisation HDYO A comprehensive website dedicated to Huntington’s affected youth around the globe. Contains relevant information for all ages, parents, friends, and professionals, adapted to be age-appropriate. | |
| Generation Next Information and content about mental health and growing up as a young person. | |
| Headspace Australia’s National Youth Mental Health Foundation. The Headspace mission is to deliver improvements in the mental health, social wellbeing and economic participation of young Australians aged 12-25. |
Crisis support
| Lifeline Crisis support and suicide prevention on 13 11 14. | |
| Beyond Blue National, independent, not-for-profit organisation working to address issues associated with depression, anxiety, and related substance misuse disorders in Australia. | |
| Call 000 (Emergency Services) if life is in danger |