Amyloidosis Australia - Support Sources

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Support Sources

Here are some associations which can provide help for those living with Amyloidosis in Australia & New Zealand. If you need help in communicating about Amyloidosis with any of these groups, we can provide help - contact us. Please email us if you have any other links to groups which have helped you.

If you need support from outside of Australasia, please contact us and we will endeavor to help you.

Australia

Primary Amyloidosis (AL):

Myeloma Foundation of Australia Inc.

http://www.myeloma.org.au/main.html
Myeloma Foundation of Australia provides education, information and support to patients, relatives, carers and health professionals by conducting educational workshops in relevant topics and publishing a regular newsletter.
They also employ a part time Myeloma Support Nurse who provides phone support to those families affected by Multiple Myeloma.
Contact: Irene Beattie - Secretary tel (03) 9807 9841
Email: info@myeloma.org.au

International Waldenstrom's Macroglobulinemia Foundation:

http://www.iwmf.com/Services.htm
For Australian Support Groups contact Gareth Evans at ghmevans@hotmail.com

Familial/Hereditary Amyloidosis (ATTR, etc):

Transplant Australia:

http://www.transplant.org.au/
They represent all transplant recipients, people currently undergoing dialysis treatment, those awaiting transplantation, donor families (including living donors) and provide financial and advisory (e.g. counseling, medical etc) assistance.

The Association of Genetic Support of Australasia:

http://www.agsa-geneticsupport.org.au/

Genetics Health Services Victoria:

http://www.genetichealthvic.net.au/pages/aboutus/familytree.html
Their links page is excellent:
http://www.genetichealthvic.net.au/pages/links.html

The Genetic Support Network:

http://www.gsnv.org.au/

Secondary Amyloidosis (AA):

Arthritis (Foundation) Australia:

http://www.arthritisaustralia.com.au/

Australian Rheumatology Association:

http://www.rheumatology.org.au/

Lupus Foundation

there are various state groups - see this page for links to each state:
http://www.lupus.com.au/

General:

Australian & NZ Dialysis and Transplant Registry:

http://www.anzdata.org.au/

Heartbeat Victoria:

http://www.heartbeatvictoria.org/HBVusingoursite.html
Give support (including cheap accommodation in Caulfield at Heartbeat House) and reassurance to cardiac patients and their families when corrective surgery has been or may be necessary.