The Australian Amyloidosis Network was formed in 2015 through a loose amalgamation of the, then, three Australian Amyloidosis Centres in Brisbane, Sydney and Melbourne. A Centre has since been formed in Perth.  Talks are now in progress  between the acting AAN executive committee and a lawyer to form the AAN into a legal entity.

At this time patients and families are represented on the AAN by a patient advocate, Pat Neely, who has  a great deal of experience in the clinical care of  amyloidosis patients and working with other organisations, as well of personal experience of AL amyloidosis.  She  is a formation member of the AAN and a member of the acting executive committee.

However now is the time to establish whether wider patient and family representation on the AAN  is needed across Australia.

Some discussion by e-mail have taken place across Australia with a number of patients and families, to consider a model where there would see 2 representatives  from each state form an AAN patient and family committee. This would replace the present advocate position.

The first virtual meeting discussing whether forming such a committee is feasible and how it might work was held on October 16. You are invited to a follow up meeting on Friday November 13.

This is an important time for the AAN and for future patient and family representation so please consider joining us.

You can sign up using the form below.