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
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 Arun Gupta, Gastroenterologist Dr Mahima Kapoor, Neurologist Dr James Theuerle, Cardiologist A/Prof Darren Lee, Nephrologist |
– Correcting Weight loss and Cachexia – Managing Hypotension and Neuropathy – 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 | ||
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 | ||
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 |
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 | |