Founded in 1978 to promote the needs of people with Huntington’s disease and their families and to provide them with a strong single voice, the Huntington’s Disease Association became incorporated in 1983.
We are a not-for-profit, non-government organisation with a focus on providing information, education, advocacy and support for people with Huntington’s disease and their families, and we rely on donations and fundraising to augment a small grant from DHHS which covers our administration costs.
Our role is providing information, education, advocacy and support to people with Huntington’s disease, their families and carers and to the wider community
Our work encompasses
- providing a quarterly newsletter to keep the Tasmanian HD community informed on current local, national and international research activities and other useful local information
- small resource library
- support groups
- social networking
- resource sharing and special needs support
- education including conferences and seminars
- referral to specialist services
- 24 hour family phone support
- lobbying Government to ensure the maintenance of services to HD families