Find below the final agenda for the MPE Annual General Meeting 2019.
Friday, 15 March 2019
13:00 – 15:00
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Check-in and registration
Lunch at the hotel restaurant “Bistro”
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15:00 – 15:10
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Welcome & Introductions
Hans Scheurer – President MPE
Ananda Plate – CEO MPE |
15:10 – 16.10 |
Myeloma Treatment Updates
Chair: Riikka-Leena Manninen, MPE Board Member
- Treatment of newly diagnosed myeloma
- Role of maintenance treatment
- New and upcoming treatments for NDMM
- Updates on treatment of relapsed myeloma
- New and upcoming treatments for relapsed MM
- Update on related conditions (myeloma, AL amyloidosis etc)
Speaker: Prof. Heinz Ludwig, Wilhelminen Cancer Research Institute, Austria
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16:10 – 17:00 |
Spotlight on MPE scholarship programme
Chair: Kate Morgan, MPE & Ana Vallejo, MPE
- Myeloma UK (UK) – Research Capacity Building Workshops, Jayne Galinsky
- Blodkreftforeningen (Norway) – Workshop on patient involvement in myeloma research, Jacob Hygen
- Kraujas (Lithuania) – Myeloma infoday and the book “Sexuality and oncological diseases”, Aistė Strelčiūnė
- Blodcancerförbundet Sweden (Sweden) – Workshop on combination therapy in myeloma, Lise-Lott Eriksson
- Borka (Macedonia) – Myeloma campaign “Let’s make changes”, Biba Dodeva
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17:00 – 17:15 |
Coffee break |
17:15 – 19:00 |
Plenary Workshop AL Amyloidosis
Chair: Ananda Plate and Hans Scheurer, MPE
Introduction to AL amyloidosis (20 min)
Speaker: Dr Moshe Gatt, Israel
AL amyloidosis from a patient advocates view (10 min.)
Speaker: Daniel Drimer, Amyloidosis Israel Challenges of diagnosing myeloma from the patient advocates view (10 min.)
Speaker: Varda Shoham, Myeloma Israel
Workshop (40 min. team work in small groups and 20 minutes for discussion/feedback)
- How can the AL amyloidosis and myeloma community collaborate to help build a stronger AL amyloidosis community in Europe?
- What does the picture of diagnosing AL amyloidosis and myeloma look like in your country?
- How can we tackle the issue of late diagnosis of AL amyloidosis and myeloma at national level?
- What can MPE do to tackle the issue of late diagnosis of AL amyloidosis and myeloma at a Europe level?
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20:00 – 22:00 |
Dinner (Hotel restaurant “Bistro”) |
Saturday, 16 March 2019
9:00 – 10:00 |
Surrogate end-points and biomarkers in myeloma and AL amyloidosis
Chair: Ron Dloomy, MPE Board Member
- Minimal residual disease in myeloma and AL amyloidosis
- Biomarkers in myeloma and AL amyloidosis
- Regulatory challenges associated with these and getting new medicines approved
Speaker: Dr. Moshe Gatt, Israel |
10:00 – 10:15 |
Coffee break |
10:15 – 11:15 |
The role of CAR-T – Room: Sapporo/Harrare
Chair: Roman Slomkowski, MPE Board Member
- What is CAR-T?
- How does it work?
- How is it being looked at in myeloma?
- Companies involved in this
- Application in AL amyloidosis?
- Regulatory challenges faced (e.g. cost, hospital provision etc)
- Role of advocacy in trying to make this available for patients
Speaker: Dr. Michael Hudecek, University of Wuerzburg, Germany |
|
11:15 – 11:30 |
Coffee break |
11:30 – 12:30 |
AL amyloidosis clinical session – Updates in treatment of AL amyloidosis
Chair: Lise-Lott Eriksson, Blodcancerförbundet Sweden
- Diagnostics
- Link between myeloma and AL amyloidosis
- Treatment of newly diagnosed AL amyloidosis (and updates from ASH)
- Treatment of relapse AL amyloidosis (and updates from ASH)
- Coordinated care in AL amyloidosis
- Upcoming treatments and clinical trials
Speaker: Dr Moshe Gatt, Israel |
Breakout Session Advocacy
“Measuring and utilising quality of life”
Chair: Kate Morgan, MPE
- PROMS, PREMS, PRO, QoL measures and patient
- Preference studies
- Examples in myeloma
- Examples in AL amyloidosis
- How they can be used in practice?
- Can they improve survival?
Speaker: Jayne Galinsky, Myeloma UK
|
12:30 – 14:00 |
Lunch |
14:00 – 16:15 |
ROTATING WORKSHOP SESSIONS
(45 minutes each – Choose 2 out of 3, 15 min for rotation)
- Internal and external communications. How to create a communications strategy
Speaker: Ana Vallejo, Myeloma Patients Europe
- Fundraising for patient groups
Speaker: Michaela Geissler, Sarcoma Patients EuroNet Association (SPAEN)
- Reasonable Agreements between Patient Advocates and Pharmaceutical Companies
Speaker: Jan Geissler, CML Advocates Network
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16:15 – 16:45 |
Coffee Break |
16:45 – 17:30 |
Supportive and psychosocial issues for myeloma and AL amyloidosis
Chair: Ibolya Keri, MOHA, Hungary
- Psychosocial issues for patients (supportive care, emotional care etc)
Speaker: Fatima Castaño, psycho-oncologist
- Communicating with patients
Speaker: Diego Villalón, social worker, Fundación MÁS QUE IDEAS
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19:30 – 22:00 |
Offsite dinner in Munich |
Sunday, 17 March
8:30 – 10:45 |
General Assembly (for MPE members only)
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11:15 – 11:45 |
Coffee break |
11:45 – 13:00 |
General Assembly (for MPE members only)
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13:00 – 14:00 |
Farewell lunch |
For questions, please contact the MPE AGM team at agm@mpeurope.org.