My Amyloidosis Story My name is Sue Birdsall and I am 79 years old. In April 2016 I was diagnosed with AL Amyloidosis affecting my heart. I have intended to write my story for some time. Now seems particularly pertinent as I am currently in remission after 7 long [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
