National Amyloidosis Day, May 8
National Amyloidosis Day, May 8 is a day the Australian Amyloidosis Network, AAN, marks to pause and think about those patients and families whose lives have been changed by a diagnosis of amyloidosis. And to be thankful that there are more effective and well tolerated treatments than ever before, meaning amyloidosis is no longer the death sentence it so often was.
The ANN is the only charity in Australia devoted completely to improving medical treatment, psychosocial care and education for patients and families with all types of amyloidosis throughout Australia. And the only organisation in which patients and families work in partnership with doctors and health professionals to achieve these goals.
Did you know AAN has a web site packed with interesting and helpful material for patients and families and doctors? Here you can read patient stories, watch video recordings from past AAN education workshops, learn about clinical trials and the research being carried out by Australian doctors. Or listen to talks delivered at the 2022 and 2023 AGM by Professor Philip Hawkins and Mrs Pat Neely AM (look for Emeritus Members on the AAN Governance page), reflecting on the early days of amyloidosis care in UK and Australia and how through the cooperation and hard work of doctors and patients, the Australian Amyloidosis Network became a Company with Limited Guarantee and a Charity in 2021.
However, there is still so much more to do.
For instance, many patients and their families do not receive the support and education they deserve and need at diagnosis or when a crisis arises in their lives. The AAN is seeking funds to run a telephone support service to listen to the patients and direct them to where they can receive the help they are seeking.
On this National Amyloidosis Day please consider donating to the AAN to allow this charity, which receives no government funding, to continue the present services it offers and embark on new ones, so the lives of all those living with amyloidosis can be improved and enriched.
Thank you
Pat
