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:
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:
Adelaide Hills Convention Centre,
Hahndorf
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. |
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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 |
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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 |
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1100-1130 | Dr Patrick Hosking | Don’t Stop at the (Congo) Red Traffic Light – Nailing the Correct Amyloid Subtype Chair: Dr Ellen Maxwell |
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1130-1150 | A/Prof James Hare and A/Prof Peter Mollee | Advances in Amyloid Imaging – Echocardiography, CMR, bone scintigraphy & PET Chair: Dr Raef Boktor |
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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 |
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1230-1300 | Lunch |
1300-1330 | Isabelle Lousada | Connecting and advocating with your patient – Lessons from the USA.Amyloidosis Research Consortium Chair: Dr Anish Puliyayli |
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1330-1410 | Murielle Roussel | Improving Treatments and Survival in AL Amyloidosis Chair: Prof H. Miles Prince |
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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 |
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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 |
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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 |
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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 |
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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 |
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1510-1525 | Afternoon tea |
1525-1545 | Dr Brendan Wisniowski | Accessing clinical trials and new drugs: What is the future? Chair: Evan Bittner |
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1545-1555 | Panel: Kapoor, Gane, Hare, Motorna, Lousada, Grogan, Lee, Wisniowski, Christmas | Open Mic – Questions you’ve always wanted to ask
Chair: Pat Neely |
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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? |
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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 |
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1240-1310 (1440-1510 AEST) |
All international speakers | Virtual Panel discussion with patients in Western Australia | ||
1310-1340 (1510-1540 AEST) |
Dr Merrilee Needham |
Quality of Life -Managing Neuropathy -Quality of Life on chemotherapy |
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1340-1400 (1540-1600 AEST) |
Local patients and experts | Patient Journeys – ATTR Patient – AL Amyloidosis Patient |
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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 |