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

1030-1630

Health Professionals Workshop

1200-1600

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

Patient, Family, Carer Workshop

Health Professionals Workshop

Location:

Fiona Stanley Hospital
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

1015-1610

Health Professionals Workshop

1100-1600

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
0830-0835 Emad Abro Welcome and Introduction
0835-0850 Peter Mollee About the QLD Amyloidosis Centre – Services, Overview of Current research projects, Trials
0850-0905 Niri Anderson Epidemiology of Amyloidosis
0905-0920 Simon Gibbs Diagnosing Amyloidosis
0920-0935 Duncan Lambie IHC problems & pitfalls / research project update & Mass Spectrometry
0935-0950 Meenan Palamuthusingham Monoclonal Gammopathies of Renal Significance
0950-1030 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
1100-1115 Dariusz Korczyk Cardiac Imaging: Echo
1115-1130 Matt Burrage Cardiac Imaging: MRI
1130-1145 TBC Scintigraphy
1145-1200 Antonia Carroll Neurological assessment tools in Amyloidosis
1200-1215 Antonia Carroll Hereditary ATTRv update
1215-1230 Session Speakers Q&A
1230-1300 Lunch
Management of Amyloidosis
1300-1400 Martha Grogan ATTR Management. How I treat ATTR. Including 10min Q&A.
1400-1500 Murielle Roussel AL Management: How I Treat AL. Including 10mins Q&A
1500-1530 Afternoon tea
Local Updates and Case discussion
1530-1545 Dariusz Korczyk Cardiac ATTR Treatment Options in Australia and Clinical Trial Update
1545-1600 Simon Gibbs 2023 Australian Guidelines for AL Amyloidosis
1600-1700 Panel international speakers and local speakers Cases Discussion (x 2 cases 1 AL and 1 TTR) and Q&A
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 Pat Neely The AAN Patient and Family Advisory Committee. What does it do?
0910-0920 Peter Mollee Update on the AAN and the PAH Centre
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 Local expert Amyloidosis and the effects on the kidney
1005-1020 Nabeel Sheikh Amyloidosis and the effects on the nerves
1020-1030 Panel Q&A
1030-1100 Morning tea
Interactive Session Chair: (Seminar room 2003 and 2004)
1100-1115 Peter Mollee / Dariusz Korczyk Local Research and trials update
1115-1145 Isabelle Lousada, Murielle Roussel, Peter Mollee Patient story with interactive panel discussion about AL
1145-1215 Isabelle Lousada, Martha Grogan, Dariusz Korczyk Patient story with interactive panel discussion about ATTR
1215-1230 Panel of speakers as above Wrap up and final question
1230-1330 Close & Lunch

NSW Health Professionals Workshop
Preliminary Program

8th May 2023

Time Speaker Title
0930-1000 Registration
Plenary Session 1. Introduction to diagnosis and management. Chair: TBC
1000-1005 Fiona Kwok Welcome
1005-1020 Fiona Kwok Amyloidosis. An overview and common myths and misconceptions
1020-1035 Local expert The diagnostic workup. Differentiating between ATTR and AL
1035-1050 Meena Shingde The role of Anatomical Pathology
Plenary Session 2. Multi-Modality Cardiac Imaging for Cardiac Amyloidosis. Chair: TBC
1050-1105 Local expert Cardiac amyloid scintigraphy
1105-1120 Liza Thomas Transthoracic Echocardiography
1120-1135 Local expert Cardiac Magnetic Imaging
1135-1150 Session 1 speakers Questions to panel
Plenary Session 3. A team approach to patient centred care. Chair: TBC
1150-1205 Antonia Carroll The role of the Neurologist
1205-1220 Jennifer Li The role of the Nephrologist
1220-1235 Combined speakers: Cardiologist, Jennifer Li, Antonia Carroll Practice tips on supportive care
1235-1250 Isabelle Lousada The power of patient advocacy and working with all stakeholders.
The Amyloidosis Research Consortium as a vessel of change.
1250-1300 Session 2 speakers Questions to panel
1300-1330 Lunch
Breakout Session 1. ATTR Chair: TBC Breakout Session 2. AL Chair: TBC
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 Local expert Advanced Heart Failure Management.
Cardiac Transplantation
   
1455-1605 Martha Grogan Cardiologist(s) and others Case Based Interactive Session Murielle Roussel, Haematologist(s) and others Case Based Interactive Session.
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: TBC
0830-0840 Fiona Kwok, Pat Neely, Trisha Gardiner Welcome and Introductions
0840-0850 Local expert Amyloidosis. The same diagnosis for many different disorders
0850-0900 Monique Barrett 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: Cardiologist Breakout Session 2. AL. Chair: TBC
0935-1005 Martha Grogan How do we best treat ATTR Murielle Roussel How do we best treat AL
1005-1015 Martha Grogan, Cardiologist(s), Others Qs to Panel Murielle Roussel, Haematologist(s), Others Qs to Panel
1015-1030 Morning Tea
Plenary Session 2. How we can work together to achieve the best outcomes
Co-Chairs: Pat Neely and Isabelle Lousada
1030-1035 Pat Neely Introduction to interactive session
1035-1045 Patient Speaker TBC My AL journey
1045-1115 Panel: Isabelle Lousada, NSW Cardiologist(s) Interactive Audience and Panel Session
1115-1125 Patient Speaker TBC My ATTR journey
1125-1155 Panel: Isabelle Lousada, NSW Haematologists and other specialists AL Journey. Interactive Audience and Panel Session
1155-1200 To be confirmed Closing remarks

Victoria Health Professionals Workshop
Preliminary 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 (TBC)
1130-1150 A/Prof James Hare and Prof Andrew Scott (TBC) Advances in Amyloid Imaging – Echocardiography, CMR, bone scintigraphy & PET
Chair: A/Prof Peter Mollee
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 (TBC)
1230-1300 Lunch
1300-1330 Isabelle Lousada Connecting and advocating with your patient – Lessons from the USA.Amyloidosis Research Consortium
Chair: Dr Michael Low (TBC)
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 (TBC)
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: Prof Hang Quach Breakout Session 2. ATTR. Chair: Prof Jonathan Kalman (TBC)
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 (TBC)
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
Preliminary 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 Teresa Leung (TBC) / Sue Corcoran (TBC)
Breakout Session 1. AL. Chair: Dr Philip Campbell (TBC) Breakout Session 2. ATTR. Chair: Dr Leighton Kearney (TBC)
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 (TBC) Accessing clinical trials and new drugs: What is the future?
Chair: Evan Bittner
1545-1555 Panel: Kapoor, Gane, Hare, Motorna, Lousada, Grogan, Lee, Wisniowski, Neely, Christmas Open Mic – Questions you’ve always wanted to ask
1555-1600 Pat Neely Thank you and Close

Western Australia Health Professionals Workshop
Preliminary Program

13th May 2023

Time Speaker Title
0800-0830 Registration & morning tea
0830-0840 Dr Hasib Sidiqi Welcome
0840-0900 Local expert The Basics: What is Amyloidosis and How to Identify and Stage the Different Subtypes
0900-0930 Local expert Advances in Amyloid Imaging: Echocardiography, CMR, bone scintigraphy & PET
0930-0950 Local expert Approach to Subtyping Amyloidosis: Nailing the Correct Amyloid Subtype
0950-1030 A/Prof Martha Grogan The Growing Beast: ATTR Amyloidosis Prevalence, prognosis and treatments in 2023 Speaker

Livestream from Victoria’s workshop

1030-1100 Morning Tea
1100-1130 Isabelle Lousada Connecting and advocating with your patient: Lessons from the USA.Amyloidosis Research Consortium

Livestream from Victoria’s workshop

1130-1210 Murielle Roussel Improving Treatments and Survival in AL Amyloidosis

Livestream from Victoria’s workshop

1210-1240 Local expert The Neglected Cousin – Optimising Supportive Care in amyloidosis
– Managing Hypotension and Neuropathy
– Renal Disease in AL Amyloidosis
1240-1320 Lunch
1320-1400 Local expert Managing the heart in Amyloidosis
1400-1430 Local expert What’s coming next? Resorptive monoclonal antibodies, CRISPA, bi-specifics, TTR silencers and stabilisers and more
1130-1210 All international speakers Virtual Panel discussion with Health Care Professionals in Western Australia

Dedicated site to site virtual interactive session

1500-1510 Thank you & close

Western Australia Patient Family Carer Workshop
Preliminary Program

13th May 2023

Time Speaker Title
0930-1000 Registration & morning tea
1000-1010 Dr Hasib Sidiqi Welcome
1010-1025 Local expert What is amyloidosis? What are the different types of amyloidosis? How does it affect the body?
1025-1040 Local expert Accessing clinical trials and new drugs: What is the future?
Breakout Session 1. AL. Breakout Session 2. ATTR. Chair: Prof Jonathan Kalman (TBC)
1040-1130 Murielle Roussel How do we best treat AL Amyloidosis (with Q and A)

Livestream from Victoria’s Workshop

Martha Grogan How do we best treat ATTR Amyloidosis (with Q and A)

Livestream from Victoria’s Workshop

1130-1200 Lunch/brunch
1200-1240 Isabelle Lousada and others 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 NeelyLivestream from Victoria’s Workshop
1240-1310 All international speakers Virtual Panel discussion with patients in Western Australia

Dedicated site to site virtual interactive session

1310-1330 Local experts Supportive Care
– Heart
– Nerves
– Gastrointestinal tract
1330-1400 Local patients and experts Patient Journeys
– ATTR
– AL
1400-1410 Thank you & close

South Australia Health Professionals Workshop
Preliminary Program

14th May 2023

Time Speaker Title
1000-1015 Registration & morning tea
Session One
1015-1030 Noemi Horvath Welcome address
1030-1050 Local expert Spectrum of amyloidosis in RAH/SA
1050-1110 Local expert Challenges in subtyping amyloid
1110-1200 Martha Grogan AL Management.
How I treat AL.
1200-1220 Local expert 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 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 Rousel, Isabelle Lousada, Local experts Panel discussion
1600-1610 Dr Horvath Closing notes

South Australia Patient Family Carer Workshop
Preliminary Program

14th May 2023

Time Speaker Title
1030-1100 Registration & morning tea
Session One
1100-1120 Noemi Horvath Welcome address
1120-1150 Local expert What is amyloidosis? What are the different types of amyloidosis? How does it affect the body. Challenges in diagnosis
1150-1200 Pat Neely AAN background and PFAC update
1200-1250 Isabelle Lousada The power of patient advocacy. Achieving the best with your health care professionals.
1250-1320 Lunch
Session Two
1320-1410 Murielle Roussel How do we best treat AL
1410-1500 Martha Grogan How do we best treat ATTR
1500-1520 Simon Gibbs Clinical trials
1520-1540 Simon Gibbs Update of the AAN
1540-1600 Closing address & afternoon tea