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

Closing, Best Poster Award and Next Steps

video