Day 1
Pre-Conference Session
Joint Opening – Welcome: Jon Mathias, Lorna Warwick & Jana Pelouchova – video
MPN 101, NCCN Guidelines, further updates – Dr. Martin Ellis – video
MPN Medical session 1 – Future of MPN’s
Interferon – Dr. Martin Ellis – video
New therapies (incl. Crisper, Immunotherapy, CAR-T cell) – Dr. Ruben Mesa- video
Overview of current and planned clinical trials – Dr. Claire Harrison- video
Medical Session 2 – (MPN & CLL) Wait n Watch
Challenges of Managing Patients & Families at Diagnosis and Through Watch & Wait – Doctor Perspective (CLL & MPN) – Dr. Haifa Kathrin Al-Ali – video, Dr. Brian Koffman – video
Challenges that Patients Have with Watch & Wait – Patient Perspective – Robi Zelig, Pierre Aumont – video
Q&A – Dr. Haifa Kathrin Al-Ali, Dr. Brian Koffman, Robi Zelig, Pierre Aumont – video
Day 2
Advocacy Session 1 – Best practices
Information sharing with patients and relatives along 3 channels: in person, in print and on-line – Niels Jensen (Lyle – Denmark) – video
Establishing the Canadian MPN Research Foundation – Cheryl Petruk (Canadian MPN Network, Canada) – video
Watch & Wait Tracker – Elizabeth Lye (Lymphoma Canada, Canada) – video
PV Reporter – David Bruce Wallace (MPN Cancer Connection, USA) – video
Patient support group and charity golf tournament – Elena Georgieva (Bulgarian Lymphoma Association, Bulgaria) – video
How to run an Internet forum for MPN Patients, Pros and Cons – Rainer Kuhlmann & Werner Zinkand (German MPN-Netzwerk, Germany) – video
Advocacy Session 2 – (MPN & CLL) What is Advocacy from Theory to Reality
Active Advocacy – Power or Advocacy HIV example / CABs – Tamás Bereczky (EUPATI/LeukaNET/EATG) – video
Using advocacy to achieve goals – Elizabeth Lye & Deborah Baker (CLL – Canada) – video
How patients can get involved in research – Lydia Makaroff (ECPC) – video
Medical Session 3 – Panel discussion: Research Process with Industry & Doctors
How are patients recruited for clinical trials?
How is the Efficacy of clinical trials proven?
Recruitment of Doctors for Clinical trials
Panelists: Jim Fong, CTI / David Dubinski, Incyte / Alexey Salamakha Novartis/ Dr. Ruben Mesa / Dr. Martin Ellis and Dr. Andrija Bogdanovic – video
Day 3
MPN Medical session 4 – Living well with MPNs
Role of the clinic Nurse Specialist (incl. symptom management) – Yvonne Francis – video
Psycho-social aspects – Dr. Luka Bailo – video
Landmark study – Dr. Ruben Mesa – video
Advocacy Session 4 – (MPN & CLL) Access – Evidence-Based
Challenge of access to therapies – Dr. Andrija Bogdanovic, Dr. Mirjana Babamova- video & Maja Kocic – video
How advocacy can influence access – Teodora Kolarova – video
Presenting evidence to prove the case – Jon Mathias (MPN – UK) & Michelle Woerhle (MPN – USA) – video