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 [...]
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 [...]
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 [...]
The AAN was very proud to run inaugural AGM on 24th November. It signified a lot to us and reminded us of how far we come as an organisation. We invited Professor Philip Hawkins to attend. Professor Hawkins' speech was moving and inspiring. For those of you who unaware, Philip [...]
Hello and welcome to our AAN blog designed to post items by you and for you, about all things amyloid! We welcome blog submissions from all quarters of our amyloid community. You can be a patient, a doctor or simply someone passionate about this thing called amyloid. The AAN [...]
Hello and welcome to our AAN blog designed to post items by you and for you, about all things amyloid ! We welcome blog submissions from all quarters of our amyloid community. You can be a patient, a Dr or simply someone passionate about this thing called amyloid. The AAN [...]
A long and difficult journey to a diagnosis of a disease I had never heard of. Although I have recently been diagnosed with Hereditary ATTRv Amyloidosis I believe that I have had some symptoms for most of my life. In 2014 I started having issues with my back, ending up [...]
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 [...]
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 [...]
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 [...]
Find and share the stories of real people around Australia and their personal experiences of Amyloidosis.
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 [...]
