What is the Australian Amyloidosis Network?
Our Purpose
The goal of the organisation is to improve the outcome for patients with all types of amyloidosis and related diseases.
The AAN’s work is primarily focussed on Australia where our members reside. We also collaborate with other national and international groups.
Our Vision
Working together – Seeking a cure
Our Mission Statement
The Australian Amyloidosis Network works in partnership with health professionals, patients, and families from all the States and territories to:
- improve diagnosis, treatment, and quality of life for people with amyloidosis.
- provide information and support for health professionals and people affected by amyloidosis and
- undertake amyloidosis research and advocacy.
The AAN is a company limited by guarantee, a registered charity and an endorsed deductible gift recipient.
The objects of the Company are to pursue the following charitable purposes:
- to provide training and education of medical professionals, patients and their carers regarding the diagnosis (including accurate sub-typing), treatment and management of amyloidosis of every type;
- to undertake and promote research into the causes, diagnosis, treatments and management of amyloidosis and publishing the results of that research;
- to advocate, in partnership with patients with amyloidosis and medical professionals, to ensure equitable access to the best possible treatments for all persons suffering amyloidosis of any type in Australia and for there to be a greater understanding of what it is like to live with amyloidosis; and
- to enhance awareness and to promote the multi-disciplinary and collegiate management of the diagnosis and treatment of amyloidosis patients, including supportive care;
- to enhance the quality of life of patients of amyloidosis and related diseases
This field will contain a link to a password-protected page where the policies may be viewed.
The AAN was formed in 2016 as a network of four multi-disciplinary Amyloidosis centres in Brisbane, Sydney, Melbourne and Perth, each dedicated to the diagnosis and management of Australian patients with all types of Amyloidosis.
Each centre’s individual strengths, expertise in Amyloidosis care and resources were pooled with the aim of advancing multidisciplinary, consensus-led and co-ordinated management of Amyloidosis in Australia. Some of the doctors had worked for many years in the field of amyloidosis. Many others have done clinical and scientific research; written papers and guidelines for medical journals; worked in international centres of expertise (such as the UK National Amyloidosis Centre); and spoken at domestic and international medical conferences.
Patient advocacy is provided in the network by a medical social worker with personal, clinical and research experience in the care of amyloidosis patients and families.
The AAN adopts an open, collegiate, team-based approach to the diagnosis and management of amyloidosis. The four centres acknowledge that there are other specialists throughout Australia providing medical care to amyloidosis patients. Each centre is committed to working with these specialists to share knowledge, expertise, advice and support when required, to enable the best possible care for all amyloidosis patients, wherever they may live in Australia.
The AAN was incorporated as a company limited by guarantee in December 2021 and registered as an Australian Charity in May 2022.
The AAN’s first emeritus membership was awarded to Professor Philip Hawkins of the National Amyloidosis Centre in London.
In November 2022, at the first AGM of the Australian Amyloidosis Network (AAN), the Board was delighted to award the first emeritus membership to Professor Philip Hawkins of the National Amyloidosis Centre in London, UK, in recognition of his outstanding contribution to the field of amyloidosis medicine, including his 20 years of support and education of Australian amyloidosis patients, carers and physicians and health care workers , and for excellence in research into the diagnosis and treatment of all forms of Amyloidosis and related disorders.
This website is designed as a practical resource for Australian patients, their carers, doctors and allied health providers.
The information in this website is subject to continuing research, clinical experience, differences in opinions among authorities and the unique aspects of each individual situation.
Please note that we provide general health information and it is important to recognise that the circumstance of each individual will differ and be unique. As such the information on this website cannot replace the considered process of decision making made by specialist doctors which is necessary to provide the best tailored management plan for each individual patient and their particular circumstances.
Each patient and their physicians should exercise their own judgment with respect to the use of the AAN website and should carefully evaluate the currency, completeness, accuracy, reliability, suitability and relevance of the available information.
More information on this website’s Terms of Use
Contributors to this website in alphabetical order:
Dr Jay Baumwol,
Cardiologist, Perth
Dr Antonia Carroll,
Neurologist, Sydney
Dr Julian Cooney,
Haematologist, Perth
Dr David Farlow,
Nuclear physician, Sydney
Dr Simon Gibbs,
Haematologist, Melbourne
Dr Chi-Jen Hsu,
Cardiologist, Sydney
Dr Dariusz Korczyk,
Cardiologist, Brisbane
Dr Fiona Kwok,
Haematologist, Sydney
Dr Darren Lee,
Nephrologist, Sydney
Dr Jennifer Li,
Nephrologist, Sydney
A/Professor Peter Mollee,
Haematologist, Brisbane
Mrs Pat Neely,
Medical Social Worker, AAN patient advocate
Dr Richard Phoon,
Nephrologist, Sydney
Professor Graeme Stewart,
Immunologist, Sydney
Dr Mark Taylor,
Immunologist, Sydney
Professor Liza Thomas,
Cardiologist, Sydney
Dr Michael Walsh,
Neurologist, Brisbane
We also recognise with thanks all those patients and families who have contributed to this site.
Our team
Board of directors
The AAN is governed by the Board of management in accordance with the AAN constitution.
The Board manages the company and directs the affairs of the company in accordance with the AAN Constitution.
