Self Help Organisations

This category provides an overview of organisations dedicated to assisting those with neurological and closely related conditions. It is included here to raise nurses’ awareness of community supports and provide an access point for consumer health information on specific conditions. Information provided in this section should be checked against other reliable resources.

Aaron
This site is designed as an information source for parents caring for a child with a tracheostomy and will be particularly useful to the paediatric neuroscience nurses amoungst us. It is a comprehensive site with an emphasis on written directions but includes illustrations, movie and video demonstrations as well. There are good specific links and access to webrings and chatrooms.

Acoustic Neuroma Association NSW

Alzheimer’s Association of Australia

American Brain Tumour Association

Asia Pacific Hospice Palliative Care Network
Want to know more about what Palliative Care Services available regionally. This excellent site profiles Palliative Care Services available in the Asia Pacific Region. There are images accompanying the profiles which are a fascinating glimpse into service delivery in neighbouring countries.

Australian Addisons Disease Association Inc.

Australian Huntingtons Disease Association

Australian Pituitary Foundation

Brain Injury Association of New Zealand Inc.

Chronic Illness Alliance of Victoria Incorporated

Epilepsy Association
This website is designed mainly as a contact reference point for people with epilepsy Australia wide and it is a useful starting point to access further resources. Of interest to ANNA members are the Research Travel Bursaries and under the Information section, an outline of services provided and Association publications. These will soon be available online which will enhance the site from a health professionals point of view.

Epilepsy Society of Australia
View information on the upcoming conference in November and consider membership for free subscription to ‘Epilepsia’.

Grieflink
This South Australian Site is an asset to anyone. Based around three broad sections titled ‘About Grief’, ‘Coping with Grief’ and ‘Helping the Bereaved’ you can search different topics such as ‘Indigenous Grief’, read an outline of the main points and then choose to be linked to the support services and resources appropriate to that category. Although South Australian specific, the types of services identified are available Australia wide and these could be used as a starting point for further information about resources in other states.

Head Injury Society of New Zealand

Headway Victoria

Inflammatory Neuropathy Support Group of Victoria Inc.
Support and information for people with Guillian Barre Syndrome or Chronic Inflammatory Demyelinating Polyneuropathies.

Motor Neurone Disease Association of Australia

Myasthenia Gravis Foundation

National Heart Foundation of Australia

National Organisation for Rare Disorders
I tested out the rare diseases database on this site and was impressed. I hope you too can find what you’re looking for.

Palliative Care Australia
This site has an excellent directory of Palliative Care Services available Australia wide. Its publications section contains multicultural brochures and service and multicultural guidelines for the delivery of Palliative Care Services.

Spinal Cord Injuries Australia

The Association of Genetic Support of Australasia Inc.,
An affiliation of over 500 different genetic disease associations with Austalasian contact details and where to get support and information.

The Australian Rett Syndrome Study
Association contacts, information, and opportunities to participate in this collaborative Australian study which aims to improve data collection and reliability of research findings in relation to Rett Syndrome in Australia.

w.h.a.t a n.e.r.v.e