The Association provides support services to families living with Huntington's Disease in the New South Wales and the Australian Capital Territory. Its official website includes a ‘News and Events’ page to keep readers in touch with Association events.

Its strongest feature is that it is an access point and effectively a contacts database for the community of Huntington’s Disease patients, their carers and the NSW support network.The site’s chief uses are as a source of information about and contacts for the association itself and as a link to other organisations and information.

The information on Huntington’s Disease itself is concise and focused, and though not exhaustive, it is an appropriate ‘primer’ for carers or patients facing a recent diagnosis.

Basically, it’s a great place to start learning about the condition, but the information on the site itself (which is developed and maintained almost entirely by devoted volunteers) is not intended to be deep. What it is intended to be is wide-ranging and practical, and in this, it succeeds marvellously. The site gets to the crunch of what a carer of someone with the disease would need to know to make sensible choices about things like treatment and nutrition, for example.

While some readers may wish the information went deeper, the brevity will be an advantage for those who need to quickly gain a well rounded knowledge about the disease and the medical jargon attached. And let’s face it: most carers don’t have the luxury to wade through pages and pages of technical stuff; they need to know what to actually do.

The site is most effective, however, as a source of links to other online resources but especially to organisations and hard copy support packs that can help people with the disease and their carers. While there is little information for supporting carers, there are many links and contact numbers for where you can get that information and other forms of support.

Plus, the content on the association itself, especially valuable contact numbers, news and events, is fantastic and is kept up to date. The association in itself clearly represents a great contact point and support for carers of people with Huntington’s Disease. The website includes thorough information on the association, its history and its services and facilities, such as Elsie Court Cottage and the holiday program. There is also an introduction and contact info for the association’s brand new ‘Caring for HD Carers’ program.

Visit the website: www.ahdansw.asn.au

About the association:

The association was established in 1975. Its aims are to ‘develop support and educational programs for people affected by Huntington's Disease in NSW and the ACT, to assist their families to understand and cope, and to give these families a strong single voice’, according to the website, which also says:

“The energies and resources of the Association are directed towards satisfying the needs of people with or at risk for Huntington's Disease and their families in NSW and the ACT by providing and/or facilitating delivery of a range of quality services.

“The philosophy underlying all our services encompasses the principle that people with Huntington's Disease and their families are individuals with equal value to all other members of Australian society, with the right to treatment and care by knowledgeable professionals and care givers, the right to appropriate support services and the right to have the best quality of life possible.”

The members of the association clearly care deeply about its cause. This excellent website is developed and maintained almost entirely by volunteers. Given this financial constraint, the website deserves to be acknowledged as a thorough and professional resource that ‘bats above its weight’.