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About Australian Amyloidosis Network

Enhancing awareness and early diagnosis of Amyloidosis

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|

A diagnosis of Localised amyloidosis – My story

My journey with Amyloidosis began in November 2018 when I discovered an alarming protrusion on the surface of my right breast. That day my doctor immediately arranged for me to present at the Wesley Hospital’s Diagnostic Breast Clinic for investigation. The tests carried out at that Clinic included an Ultrasound [...]

2021-11-19T10:10:47+11:00November 14th, 2021|Patient Experiences|

Multiple Myeloma and ATTRwt : balancing two difficult diagnoses

In about 2006 I experienced chest pain, but my doctors came up with no explanation and it was put down to either a panic attack or chopping wood with an axe! However, a remark was made at the time that that I had a slight thickening in my heart [...]

2021-09-23T10:30:24+10:00September 23rd, 2021|Patient Experiences|
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