About Australian Amyloidosis Network

Enhancing awareness and early diagnosis of Amyloidosis

Leukaemia Foundation launches new Optimal Care Pathways

The Leukaemia Foundation launches new Optimal Care Pathways or OCPs designed to improve patient outcomes by ensuring specialists, hospitals, GPs and ultimately patients have access to nationally consistent best practice treatment, care and information. Two of the new OCPs are AL amyloidosis and Myeloma and may be of interest [...]

2024-06-14T15:41:23+10:00June 14th, 2024|Latest News.|

Australian National Amyloidosis Day May 8, 2024 – video now available

May 8, Australian National Amyloidosis Day is a very important day for raising awareness about the group of complicated relatively rare diseases, referred to as amyloidosis. This year the Australian Amyloidosis Network AAN conducted a virtual education meeting for patients and families. The meeting was arranged and chaired by [...]

2024-06-12T14:02:09+10:00May 20th, 2024|Blog, Latest News.|

Tafamidis for ATTR CA listed on the PBS from May 1

PBS listing of Vyndamax®(tafamidis) 61mg for patients with transthyretin amyloid cardiomyopathy (ATTR-CM) with NYHA Class I-II heart failure. For more detailed information use this link to the PBS website. Then click on 'Authority Required' (see sample link below) on the PBS website. Important information for patients [...]

2024-05-14T10:08:06+10:00May 1st, 2024|Blog, Latest News.|

AAN Mayo Clinic Travel Grant Winners

Congratulations to the three young researchers who are heading to the International Symposium of Amyloidosis at the Mayo Clinic on AAN travel grants Photo by Leslie Beasley on Unsplash The AAN Board is delighted to announce the award of travel grants of $5000 to three Young Australian researchers to attend the [...]

2024-04-09T19:48:01+10:00March 28th, 2024|AAN Community, Blog, Latest News.|

PBAC recommends patisiran for ATTRv with neuropathy

Patisiran has been recommended by the Pharmaceutical Benefits Advisory Committee for those with hereditary transthyretin amyloidosis with polyneuropathy. Patisiran is an intravenous a gene silencing therapy that is given every 3 weeks. In the landmark APOLLO trial Patisiran was proven to reduce the production of the disease-causing transthryretin protein resulting [...]

2024-02-02T10:14:10+11:00February 2nd, 2024|Latest News.|

Efficacy and Safety of Acoramidis in Transthyretin Amyloid Cardiomyopathy

Abstract Background Transthyretin amyloid cardiomyopathy is characterized by the deposition of misfolded monomeric transthyretin (TTR) in the heart. Acoramidis is a high-affinity TTR stabilizer that acts to inhibit dissociation of tetrameric TTR and leads to more than 90% stabilization across the dosing interval as measured ex vivo. Conclusions [...]

2024-01-21T23:48:28+11:00January 21st, 2024|Latest News.|

Consensus recommendations on holistic care in hereditary ATTR amyloidosis

Hereditary transthyretin-mediated amyloidosis is a rare, progressive and potentially life- limiting multisystem disease, affecting every aspect of a patient’s life. This online international Delphi survey aimed to evolve clinical−patient-led practical guidance, to inspire and encourage a holistic approach to care that is managed in specialist settings by multidisciplinary teams [...]

2023-09-19T15:50:23+10:00September 19th, 2023|Blog, Latest News.|

Positive progress towards Medicare funded access to Tafamidis and Patisiran for ATTR

PBAC has recommended PBS listing of Vyndamax®(tafamidis) 61mg for patients with transthyretin amyloid cardiomyopathy (ATTR-CM) with NYHA Class I-II heart failure.  The latest Pharmaceutical Benefits Advisory Committee (PBAC) Meeting was held in July and it recommended the Public Benefit Scheme (PBS) listing of Vyndamax (tafamidis) 61 mg for patients [...]

2023-08-21T11:59:42+10:00August 21st, 2023|Latest News.|

My Amyloid Journey – Chris’s Story

Hello all, I'm Chris from Brisbane. (But really, I'm an old Kiwi, living in Brisbane since 86). I actually I came to Australia first in 1967. I am now 74 years young. My confirmed diagnosis with AL amyloidosis was in December 2021. In 2018 I was confirmed first with MGUS [...]

2023-09-07T09:42:41+10:00June 21st, 2023|Patient Experiences|
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