AMYLOIDOSIS 2023
Workshops

Queensland

Saturday 6th May

0830-1630

Health Professionals Workshop

0900-1330

Patient, Family, Carer Workshop

Location:

Translational Research Institute
Princesss Alexandra Hospital Campus, Brisbane

International
Speakers:

Martha Grogan
Murielle Roussel
Isabelle Lousada

New South Wales

Monday 8th May

0830-1200

Patient, Family, Carer Workshop

1000-1600

Health Professionals Workshop

Location:

Waterview
Bicentennial Park,
Sydney

International
Speakers:

Martha Grogan
Murielle Roussel
Isabelle Lousada

Victoria

Saturday 13th May

1020-1630

Health Professionals Workshop

1145-1600

Patient, Family, Carer Workshop

The PFAC Workshop will also be livestreamed across Australia for patients who cannot attend their state’s workshop

Location:

Pullman on the Park,
East Melbourne

International
Speakers:

Martha Grogan
Murielle Roussel
Isabelle Lousada

Western Australia

Saturday 13th May

0800-1510

Health Professionals Workshop

0930-1410

Patient, Family, Carer Workshop

Location:

Fiona Stanley Hospital
Education Building, Ground Floor

Above Visitor Carpark 1

Murdoch, Perth

International
Speakers:

Martha Grogan
Murielle Roussel
Isabelle Lousada

Speakers will conduct one-on-one virtual interactive sessions with the Western Australian audiences

South Australia

Sunday 14th May

1000-1540

Health Professionals Workshop

1000-1540

Patient, Family, Carer Workshop

Location:

International
Speakers:

Martha Grogan
Murielle Roussel
Isabelle Lousada

Workshop Programs

Queensland Health Professionals Workshop
Preliminary Program

6th May 2023

Time Speaker Title
0800-0830 Registration
Amyloidosis and its diagnosis Chair Emad Abro (TRI Auditorium)
0830-0835 Emad Abro Welcome and Introduction
0835-0845 Nirija Anderson Epidemiology of Amyloidosis
0845-0905 Simon Gibbs Diagnosing Amyloidosis
0905-0915 Duncan Lambie Immunohistochemistry Problems and Pitfalls
0915-0925 James Rowland Tandem Mass Spectrometry
0925-0945 Dharmenaan Palauthisingam Monoclonal Gammopathies of Renal Significance
0945-1000 Peter Mollee Update on the QLD Amyloidosis Centre and the AAN
1000-1030 Isabelle Lousada The power of patient advocacy and working with all stakeholders. The Amyloidosis Research Consortium as a vessel of change.
1030-1100 Morning tea
Assessing amyloidosis Chair: Arun Dahiya (TI Auditorium)
1100-1115 Arun Dahiya Cardiac Imaging: Echocardiogram
1115-1130 Matthew Burrage Cardiac Imaging: Magnetic Resonance Imaging
1130-1145 Dariusz Korczyk Cardiac Imaging: Bone Scintigraphy
1145-1200 Antonia Carroll Neurological Assessment Tools in Amyloidosis
1200-1215 Antonia Carroll Hereditary Transthyretin Amyloidosis
1215-1230 Session Speakers Q&A
1230-1330 Lunch
Management of Amyloidosis Chair Dariusz Korczyk (TRI Auditorium)
1330-1410 Martha Grogan ATTR Management. How I treat ATTR. Including 10min Q&A.
1415-1500 Murielle Roussel AL Management: How I Treat AL. Including 10mins Q&A
1500-1530 Afternoon tea
Local Updates and Case discussion: Chair Peter Mollee (TRI Auditorium)
1530-1545 Dariusz Korczyk ATTR Treatment Options in Australia
1545-1600 Simon Gibbs Australian Guidelines for AL Amyloidosis 2023
1600-1700 Panel (Lousada, Grogan, Roussel, Gibbs, Korczyk) Cases Discussions
1700 Close

Queensland Patient Family Carer Workshop
Preliminary Program
6th May 2023

Time Speaker Title
0830-0900 Registration
What is Amyloidosis? Chair: Carmel Woodrow (Seminar room 2003 and 2004)
0900-0910 Peter Mollee Update on the AAN
0910-0920 Pat Neely The AAN Patient and Family Advisory Committee. What does it do?
0920-0935 Simon Gibbs What is amyloidosis and the difficulty of diagnosis
0935-0950 Matthew Burrage Amyloidosis and the effects on the heart
0950-1005 Antonia Carroll Amyloidosis and the effects on the nerves
1005-1020 Dharmenaan Palamuthusingam Amyloidosis and the effects on the kidney
1020-1030 Q&A
1030-1100 Morning tea
Living with Amyloidosis Chair: Pat Neely (Seminar room 2003 and 2004)
1100-1115 Peter Mollee Update on the Queensland Amyloidosis Centre
1115-1300 Panel (Isabelle Lousada, Martha Grogan, Murielle Roussel, Bruce Townsend. Joe Kochman) Living with amyloidosis-an interactive panel discussion
1300 Lunch

NSW Health Professionals Workshop
Program

8th May 2023

Time Speaker Title
0915-945 Registration
Plenary Session 1. Introduction to diagnosis and management. Chair: Fiona Kwok
0945-0950 Fiona Kwok Welcome
0950-1000 Fiona Kwok Amyloidosis. Spectrum, prevalence, issues, myths and misconceptions
1000-1015 Shyam Panicker The diagnostic workup. With a focus on typing and differentiating between ATTR and AL
1015-1030 Meena Shingde The role of Anatomical Pathology
Plenary Session 2. Multi-Modality Cardiac Imaging for Cardiac Amyloidosis. Chair: Preeti Choudhary
1030-1045 Saxby Brown Cardiac Amyloid Scintigraphy
1045-1100 Liza Thomas Transthoracic Echocardiography
1100-1115 CJ Hsu Cardiac Magnetic Resonance Imaging
1115-1130 Session 1 speakers Questions to panel
Plenary Session 3. A team approach to patient centred care. Chair: Georgia McCaughan
1130-1145 Antonia Carroll The role of the Neurologist
1145-1200 Jennifer Li The role of the Nephrologist
1200-1215 Bernadette Hanna The role of the Adult Genetic Medicine specialist
1215-1245 Isabelle Lousada The power of patient advocacy and working with all stakeholders.
The Amyloidosis Research Consortium as a vessel of change.
1245-1300 Session 2 speakers Questions to panel
1300-1330 Lunch
Breakout Session 1. Cardiac Amyloidosis: with a focus on ATTR Chair: Gayathri Kumarasinghe Breakout Session 2. AL Chair: Shyam Panicker
1330-1350 Liza Thomas ATTR therapy in Australia Kris Ma AL therapy in Australia
1350-1435 Martha Grogan ATTR Management.
How I treat ATTR.
Murielle Roussel AL Management.
How I treat AL.
1435-1455 Andrew Jabbour Advanced Heart Failure Management.
Cardiac Transplantation
Murielle Roussel, and local experts (Fiona Kwok, Kris Ma, Shyam Panicker  and others) Case Based Interactive Session.
1455-1605 Martha Grogan and local experts (Liza Thomas, Andrew Jabbour, Georgia McCaughan, Antonia Carroll, Mark Taylor and others) Case Based Interactive Session Case Based Interactive Session continued.
1605-1610 Liza Thomas Closing remarks and farewell Fiona Kwok Closing remarks and farewell
1610-1630 Close & Afternoon Tea

NSW Patient Family Carer Workshop
Preliminary Program

8th May 2023

Time Speaker Title
0800-0830 Registration
PLENARY SESSION 1. Chair: Lisa Fisher
0830-0840 Fiona Kwok, Pat Neely, Trisha Gardiner Welcome and Introductions
0840-0850 Shyam Panicker Amyloidosis. The same diagnosis for many different disorders
0850-0900 Monique Bartlett How to monitor and care for my heart
0900-0910 Jennifer Li How to monitor and care for my kidneys
0910-0920 Antonia Carroll How to monitor and care for my nerves
0920-0935 Fiona Kwok Therapy Access in Australia. The TGA, PBS, Compassionate access, Clinical trials
Breakout Session 1. ATTR. Chair: Gayathri Kumarasinghe Breakout Session 2. AL. Chair: Kris Ma
0935-1005 Martha Grogan How do we best treat ATTR Murielle Roussel How do we best treat AL
1005-1015 Martha Grogan, local experts (Gayathri Kumarasinghe and others) Qs to Panel Murielle Roussel, local experts (Kris Ma, Georgia McCaughan and others) Qs to Panel
1015-1030 Morning Tea
Plenary Session 2. How we can work together to achieve the best outcomes
Chair: Pat Neely
1030-1035 Pat Neely Introduction to interactive audience and panel discussion session
Isabelle Lousada My journey
Roberta Thomson My AL journey
David Goninan My ATTR journey
Panel: Isabelle Lousada, local specialist and nursing experts (Kris Ma, Monique Bartlett and others) Interactive audience and panel discussion
1155-1200 Alwyn Poole Closing remarks

Victoria Health Professionals Workshop
Program

13th May 2023

Time Speaker Title
1000-1020 Registration & morning tea
1020-1035 Dr Simon Gibbs Welcome
1035-1045 Dr Michele Ananda-Rajah MP
Federal Member for Higgins
Amyloidosis and the Australian Health System.
1045-1100 Dr Olga Motorna The Basics: What is Amyloidosis and How to Identify and Stage the Different Subtypes
Chair: Dr Brendan Wisniowski
1100-1130 Dr Patrick Hosking Don’t Stop at the (Congo) Red Traffic Light – Nailing the Correct Amyloid Subtype
Chair: Dr Ellen Maxwell
1130-1150 A/Prof James Hare and A/Prof Peter Mollee Advances in Amyloid Imaging – Echocardiography, CMR, bone scintigraphy & PET
Chair: Dr Raef Boktor
1150-1230 A/Prof Martha Grogan, Mayo Clinic, USA The Growing Beast: ATTR Amyloidosis – Prevalence, prognosis and treatments in 2023
Chair: A/Prof Justin Mariani
1230-1300 Lunch
1300-1330 Isabelle Lousada Connecting and advocating with your patient – Lessons from the USA.Amyloidosis Research Consortium
Chair: Dr Anish Puliyayli
1330-1410 Murielle Roussel Improving Treatments and Survival in AL Amyloidosis
Chair: Prof H. Miles Prince
1410-1450 Chair: A/Prof Amit Khot The Neglected Cousin – Optimising Supportive Care in amyloidosis
Dr Mahima Kapoor, Neurologist
Dr Arun Gupta, Gastroenterologist
Dr James Theuerle, Cardiologist
A/Prof Darren Lee, Nephrologist
– Managing Hypotension and Neuropathy
– Correcting Weight loss and Cachexia
– Optimising Heart Failure Management
– Renal Transplantation in Amyloidosis
1450-1510 Afternoon tea
Breakout Session 1. AL. Moderator: Dr Masa Lasica Breakout Session 2. ATTR. Chair: Dr Andrei Catanchin
1510-1540 – For the Motion – Dr Murielle Roussel
– Against the Motion – A/Prof Peter Mollee
Speaker Debate – That ASCT is Dead in AL Amyloidosis Dr James Gunton Managing Arrthymias in ATTR
1540-1610 Dr Simon Gibbs and Prof Ed Gane What’s coming next? Resorptive monoclonal antibodies, CRISPA, bi-specifics, TTR silencers and stabilisers and more
Chair: Dr William Renwick
1610-1625 Panel discussion – All Speakers Future Directions and Opportunities for Collaboration
1625-1630 Dr Simon Gibbs Thank you and Close

Victoria Patient Family Carer
Program

13th May 2023

Time Speaker Title
1115-1145 Registration & morning tea
1145-1150 Dr Simon Gibbs Welcome
1150-1200 Dr Michele Ananda-Rajah MP
Federal Member for Higgins
Amyloidosis and the Australian Health System
1200-1240 Dr Julia McClelland and A/Prof Darren Lee What is amyloidosis? What are the different types of amyloidosis? How does it affect the body?
Chair: Dr Kah Peck
Breakout Session 1. AL. Chair: Dr Nick Bingham Breakout Session 2. ATTR. Chair: Dr Sue Corcoran
1240-1330 Dr Murielle Roussel How do we best treat AL Amyloidosis (with Q&A) A/Prof Martha Grogan How do we best treat ATTR Amyloidosis (with Q&A)
1330-1400 Lunch
1400-1440 Isabelle Lousada and David Boyle Achieving the best results with your health care professionals – How we can learn from each other and lessons from the Amyloidosis Research Consortium
Chair: Pat Neely
1440-1510 Chair: Jaime Christmas and Dr Arun Gupta How can I improve my quality of life?
Dr James Hare, Cardiologist, Alfred Health
Sarah Gardiner, Dietitian, Epworth Freemasons
Dr Mahima Kapoor, Neurologist, Alfred Health
Emily Minopoulos, Amyloidosis Specialist Nurse
– Managing excess fluid and improving my fitness

– Optimising my Diet

– Managing Poor Sleep, Dizziness and Nerve Pain

– Managing Tiredness and Asking for Help
1510-1525 Afternoon tea
1525-1545 Dr Brendan Wisniowski Accessing clinical trials and new drugs: What is the future?
Chair: Evan Bittner
1545-1555 Panel: Kapoor, Gane, Hare, Motorna, Lousada, Grogan, Lee, Wisniowski, Christmas Open Mic – Questions you’ve always wanted to ask

Chair: Pat Neely

1555-1600 Pat Neely Thank you and Close

Western Australia Health Professionals Workshop Program
13th May 2023

Time Speaker Title
0800-0830
(10-1030 AEST)
Registration & morning tea
0830-0840
(10.30-10.40 AEST)
Dr Hasib Sidiqi Welcome
0840-0900
(10.40-1100 AEST)
Dr Bradley Augustson
Sir Charles Gairdner Hospital
The Basics: What is Amyloidosis and How to Identify and Stage the Different Subtypes
0900-0930
(1100-11.30 AEST)
Dr William McDonald
Fiona Stanley Hospital
Advances in Amyloid Imaging: Echocardiography, CMR, bone scintigraphy & PET
0930-0950
(11.30-11.50 AEST)
Dr Hasib Sidiqi Approach to Subtyping Amyloidosis: Nailing the Correct Amyloid Subtype
0950-1030
(11.50-12.30 AEST)
A/Prof Martha Grogan
Mayo Clinic, USA
The Growing Beast: ATTR Amyloidosis – Prevalence, prognosis and treatments in 2023
1030-1100
12.30-13.00 (AEST)
Morning Tea
1100-1130
(13.00 -13.30 AEST)
Isabelle Lousada
Amyloidosis Research Consortium
Connecting and advocating with your patient: Lessons from the USA.Amyloidosis Research Consortium
1130-1210
(13.30 – 14.10 AEST)
Murielle Roussel
France
Improving Treatments and Survival in AL Amyloidosis 
1210-1225
1225-1240
(14.10 – 14.40 AEST)
Dr Merrilee Needham
Dr Ashley Irish
The Neglected Cousin – Optimising Supportive Care in amyloidosis
– Managing Peripheral and Autonomic Neuropathy
– Renal Disease in AL Amyloidosis
1240-1320
(14.40 – 15.20 AEST)
Lunch
1320-1400
(1520-1600 AEST)
Dr Jay Baumwol Managing the heart in Amyloidosis
1400-1430
(1600-1630 AEST)
Dr Hasib Sidiqi What’s coming next?
Resorptive monoclonal antibodies, CRISPA, bi-specifics, TTR silencers and stabilisers and more
1430-1500
(16.30- 17.00 AEST)
Dr Martha Grogan
Dr Murielle Rouselle
Mrs Isabelle Lousada
Virtual Panel discussion with Health Care Professionals in Western Australia
1500-1510 Thank you and close

Western Australia Patient Family Carer Workshop Program
13th May 2023

Time Speaker Title
0930-1000
(1130- 1200 AEST)
Registration & morning tea
1000-1005
(1200-1205 AEST)
Dr Hasib Sidiqi Welcome
1005-1025
(12:10- 1240 (AEST)
Dr Stephanie Lam What is amyloidosis?
What are the different types of amyloidosis?
How does it affect the body?
1025-1040
(12:10- 1240 (AEST)
Dr Hasib Sidiqi Accessing clinical trials and new drugs: What is the future?
Breakout Session 1. AL Breakout Session 2. ATTR
1040-1130
(1240-1330 AEST)
Murielle Roussel How do we best treat AL Amyloidosis? (with Q and A). Chair: Dr Philip Campbell (TBC) Martha Grogan How do we best treat ATTR Amyloidosis? (with Q and A). Chair: Dr Andrew Burns (TBC)
1130-1200
(1330-1400 AEST)
Lunch/brunch
1200-1240
(1400-1440 AEST)
Isabelle Lousada and David Boyle Achieving the best results with your health care professionals: How we can learn from each other and lessons from the Amyloidosis Research Consortium?
Chair: Pat Neely
1240-1310
(1440-1510 AEST)
All international speakers Virtual Panel discussion with patients in Western Australia
1310-1340
(1510-1540 AEST)

Dr Merrilee Needham
Ms Kerin Young

Quality of Life
-Managing Neuropathy                                                                                                                                    -Quality of Life on chemotherapy
1340-1400
(1540-1600 AEST)
Local patients and experts Patient Journeys
– ATTR Patient
– AL Amyloidosis Patient
1400-1410
(1600-1610 AEST)
Thank you & close

South Australia Health Professionals Workshop
Preliminary Program

14th May 2023

Time Speaker Title
1000-1015 Registration & morning tea
Session One
1015-1025 Dr Noemi Horvath Welcome address
1025-1045 Spectrum of amyloidosis in RAH/SA
Challenges in subtyping amyloid
1045-1135 Martha Grogan ATTR Management. How I treat ATTR amyloidosis.
1135-1155 Speaker to be confirmed
1155-1220 MDT and clinical trials
1220-1250 Lunch
Session Two
1250-1310 Simon Gibbs Update of the AAN
1310-1400 Isabelle Lousada The Power of patient advocacy and working together with all stakeholders. The Amyloidosis Research Consortium as a vessel of change
1400-1420 Simon Gibbs Supportive care in amyloidosis
1420-1510 Murielle Roussel AL management. How I treat AL amyloidosis
1510-1530 Afternoon tea
Session Three
1530-1600 Murielle, Isabelle, Simon, speakers et al Panel discussion
1600-1610 Dr Horvath Closing notes

South Australia Patient Family Carer Workshop
Preliminary Program

14th May 2023

Time Speaker Title
1000-1015 Registration & morning tea
Session One
1015-1045 Dr Angie Yong Welcome address
What is amyloidosis? Challenges in diagnosis.
1045-1055 Pat Neely AAN background and PFAC update
1055-1145 Isabelle Lousada The power of patient advocacy. Achieving the best with your health care professionals.
1145-1245 Isabelle Lousada & Pat Neely Interactive session: patient advocacy and the work of the AAN PFAC.
1245-1315 Lunch
Session Two
1315-1405 Murielle Roussel How do we best treat AL
1405-1455 Martha Grogan How do we best treat ATTR
1455-1515 Simon Gibbs Clinical trials
1515-1535 Simon Gibbs Update of the AAN
1540-1600 Closing address & afternoon tea