AGM 2019 Agenda

Find below the final agenda for the MPE Annual General Meeting 2019.

Friday, 15 March 2019

13:00 – 15:00

Check-in and registration
at the hotel restaurant “Bistro”

15:00 – 15:10

Welcome & Introductions
Hans Scheurer – President MPE
Ananda Plate – CEO MPE
15:10 – 16.10Myeloma 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

16:10 – 17:00Spotlight 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
17:00 – 17:15Coffee break
17:15 – 19:00Plenary 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?
20:00 – 22:00Dinner (Hotel restaurant “Bistro”)

Saturday, 16 March 2019

09:00 – 10:00Surrogate 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 – 10:15Coffee break
10:15 – 11:15The 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 – 11:30Coffee break
11:30 – 12:30AL 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 – 14:00Lunch
(45 minutes each – Choose 2 out of 3, 15 min for rotation)
  1. Internal and external communications. How to create a communications strategy
    Speaker: Ana Vallejo, Myeloma Patients Europe
  2. Fundraising for patient groups
    Speaker: Michaela Geissler, Sarcoma Patients EuroNet Association (SPAEN)
  3. Reasonable Agreements between Patient Advocates and Pharmaceutical Companies
    Speaker: Jan Geissler, CML Advocates Network
16:15 – 16:45Coffee Break
16:45 – 17:30Supportive 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
19:30 – 22:00Offsite dinner in Munich

Sunday, 17 March

8:30 – 10:45

General Assembly (for MPE members only)

11:15 – 11:450

Coffee break

11:45 – 13:00

General Assembly (for MPE members only)

13:00 – 14:00

Farewell lunch

For questions, please contact the MPE AGM team at