About Australian Amyloidosis Network

Enhancing awareness and early diagnosis of Amyloidosis

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|

Coronavirus: Instructions for amyloidosis patients

Vaccination is vital to help control COVID-19 and keep you and the community well. If we in Australia with the rest of the world are going to control COVID-19 also known as the  Coronavirus  and we want the Australian state borders to remain open, it is extremely important [...]

2021-12-19T22:30:16+11:00December 19th, 2021|Latest News.|

TTR Amyloidosis, A webinar, UKATPA, December 1 UK, December 2 AUS

The UK ATTR Amyloidosis Patient Association is organising a free webinar. Topic: "Diagnosing ATTR Amyloidosis" Speakers: Professor Juliane Gilmore and Professor Philip Hawkins from the National Amyloidosis Centre, Royal Free Hospital, London, will speak on Neuropathy and cardiomyopathy. Date : Wednesday December 1 at 5pm UK time. PLEASE NOTE this is [...]

2021-11-30T09:26:38+11:00November 30th, 2021|Uncategorized|
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