Australian Amyloidosis Network Limited

The AAN membership for both patients and families and doctors and health professionals has increased this year. Through the work of the AAN Board, committee system, and individual members, the AAN continues to: raise awareness for this group of devastating diseases; offer education and support to amyloidosis patients and families; and train and assist the medical teams treating these diseases, including the young doctors, medical students and researchers who are just becoming acquainted with amyloidosis. This is done through information on the web site aan.org.au, Grand Rounds, face to face and virtual education and support meetings, speaking at and submitting medical papers and posters for International and Australian meetings and through journal publications. Although the ANN does not run clinical trials the medical members of the Board in partnership with other specialists, patients and the Advocacy and Research committee are all involved in bringing clinical trials to Australia. The AAN has also worked with Pharma and the Federal Government to have new drugs to treat different of amyloidosis funded in Australia. To ensure the voice of the patient is constantly heard within the AAN and the medical community the AAN Board works closely with the Patient and Family Advisory Committee (PFAC) whose members all have amyloidosis or are a carer of a patient. They represent all the Australian states except Tasmania. Representatives from PFAC are on 6 of the 9 AAN committees. A patient with considerable ICU and teaching experience has recently been appointed to the Board to replace the inaugural patient advocate. A review of the delivery of AAN patient psychosocial support services is now being conducted by the Board and PFAC. Travel grants were awarded to three medical researchers to attend the International Amyloidosis Symposium in Rochester, Minnesota, in May. Over 1000 delegates from around the world attended, including several AAN members who chaired sessions and presented posters. A member of PFAC attended the Amyloidosis Alliance meeting on AL amyloidosis (https://www.amyloidosisalliance.org) in Brussels this year. The AAN arranged virtual education meetings for patients on May 8 for Australian Amyloidosis Day and separate meetings for patients and doctors on October 26 for World Amyloidosis Day.