Association Activities

The Association:

  • distributes a quarterly newsletter, HD News, which informs families and health professionals of the latest developments in Huntington's Disease;
  • produces and distributes a wide range of publications and other information on the many aspects of Huntington's Disease;
  • offers a free youth connection program to any younger person at risk of HD;
  • operates support groups and social programs for people with HD and their carers in Sydney and some regional centres;
  • offers NDIS Support Coordination for people with HD; and
  • maintains this website.

We also:

  • conduct a weekly social program for people with Huntington's disease;
  • (unavailable due to funding constraints) organise Holiday Camps for people with Huntington's disease; and

Education and support services are provided through such means as:

  • operating regional Support Groups
  • running the HD Youth Connection Program;
  • distributing medical research news to medical and allied health professionals;
  • holding seminars and family support meetings; and
  • providing information, advice, assistance and referral to families, health care professionals and others concerned with Huntington's Disease.

Research is an important focus of our work. More information is available about the research grants program.

We work closely with, and are supportive of other organisations including the Huntington Disease Service of the NSW Health Department which embraces:

  • the Huntington's Disease Clinic and Outreach Program at Westmead Hospital;
  • Huntington's Unit at St Joseph's Hospital, Auburn;
  • the Predictive Testing Program at the Children's Hospital, Westmead; and
  • the Huntington's Disease Service for the Hunter Region, Newcastle.

We also advocate on behalf of families to a variety of government and non-government organisations and in respect of a diverse range of issues.

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