The AAN warmly congratulates Muhammed B. Sabdia, a final year PhD student at the Mater Research Institute, The University of Queensland who was awarded the Snowdome, 2024 Gunn family haematology fellowship In April, and with continued generous funding from the Gunn Family Foundation, Snowdome Foundation invited applications for [...]
If you a patient with ATTRv with polyneuropathy, or a carer, friend, family member or health professional treating a patient with these problems the PBAC invites you to make a submission on their consumer portal.
The International Society of amyloidosis Congress was a fantastic week-long conference on all aspects of amyloidosis held in Rochester, Minnesota, the home of the Mayo Clinic. There were over 1000 attendees and a huge Australian turnout of 20 + clinicians and nurses, strongly representing the Australian Amyloidosis Network. We enjoyed [...]
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 [...]
Congratulations to our Pat Neely, newly appointed Member of the Order of Australia for her services for the amyloidosis community. The AAN proudly congratulates Pat Neely, a founding member and recently retired Board member the AAN who has been appointed a Member of the Order of Australia (AM). [...]
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 [...]
