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:
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 | ||
| 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. |
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| 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 |
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| 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 |
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| 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 |
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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 (TBC) |
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| 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 |
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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 (TBC) |
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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 Michael Low (TBC) |
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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 (TBC) 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: 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) |
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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
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) |
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| 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 |
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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 (TBC) | 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, 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 |
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| 1240-1310 | All international speakers | Virtual Panel discussion with patients in Western Australia
Dedicated site to site virtual interactive session |
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| 1310-1330 | Local experts | Supportive Care – Heart – Nerves – Gastrointestinal tract |
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| 1330-1400 | Local patients and experts | Patient Journeys – ATTR – AL |
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| 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 | |