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.

Download the AAN Constitution here.

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.

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.

Professor Philip Hawkins FMedSci

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.

Professor Hawkins was the first clinical director of the NHS National Amyloidosis Centre at The Royal Free. He is now principal Research Fellow at University College London.

He is a rheumatologist and clinical scientist renowned for his studies on amyloidosis. His seminal work includes development and implementation of serum amyloid P component (SAP) scintigraphy for diagnosis and quantification of systemic amyloidosis, a method that has greatly increased our understanding of the natural history of this hitherto poorly understood group of diseases. SAP scintigraphy has also informed and directed advances in clinical management of amyloidosism, particularly by demonstrating that amyloid deposits are reversible and treatable. He has overseen the progression of this technique from a highly sophisticated investigative research tool to a routine clinical procedure within the NHS and has probably seen and managed more patients with more different forms of amyloidosis than anyone else in the world. He is the leading authority on hereditary amyloidosis as well as familial Mediterranean fever and other periodic fever syndromes that may be complicated by amyloidosis. More mutations causing these various conditions have been discovered in his practice than anywhere else.

Professor Philip Hawkins – Emeritus member

Mrs. Pat Neely AM, BA Sociology, AMIMSW, Graduate Certificate Journalism.

At the second AAN AGM held on November 23 2022 November the AAN Board were delighted to award Emeritus Membership of the Australian Amyloidosis Network to the retiring founding Board member and patient advocate, Mrs Pat Neely, in recognition for her outstanding contribution to the field of amyloidosis, particularly for her advocacy on behalf of patients and families with amyloidosis and for fostering collaboration between health care professionals and patients and families to improve the lives of those with amyloidosis.

Pat is a medical social worker with considerable clinical and managerial experience from working in number of London and Brisbane hospitals, specializing in cancer and palliative care.

She has served on many health-related committees and was a founding member and president of Palliative Care Queensland. A member of the Queensland State Refuge Council. While director of the Mater hospitals social work department she was the lead on the strategic planning team considering future medical services in the adult section of that hospital. She was chairman of the planning team for Queensland Health South Brisbane Adolescent and Child Psychiatric Services and has served as a board member of Wesley Mission Queensland.

Pat’s interest in amyloidosis began when her surgeon husband died of AL amyloidosis in 1998. For the last 23 years she has worked in a voluntary capacity in partnerships with patients and families, doctors and health professionals in Australia and overseas to raise awareness, standards of care and build support and education services for those with all types of amyloidosis.

Pat was appointed Member of the Order of Australia for her services to Health and the Community in the January 26 Australian Honours for 2024.

Mrs Pat Neely – Farewell speech

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.