Please use the links below to view the video recordings and the slides presented in the conference sessions
Day 1
Pre-Conference Session
MPN 101 session – Dr. Martin Ellis – slides & video
Opening
Welcome – Jon Mathias, Giora Sharf and Werner Zinkand – video
Update on the MPN Advocates Network – Cheryl Jacobs – Petruk & Jon Mathias – slides & video
Medical Session #1: Quality of Life
Landmark Survey: highlight of findings, further research, impact on clinical practice, how does that impact on advocacy – Dr. Saghi Ghaffari
Psycho Social: impact on patient & families (how a chronic illness can affect a patient’s psychological state & what can be done – Prof. Ketti Mazzocco – video
Symptoms & side effects management – Dr. Martin Ellis – video
Advocacy Session #1 : Best Practices
Fundraising (regional) & Blood Cancer Awareness Month – Bill Crowley – slides & video
Leukaemia CARE 2016 Patient Experience Survey – Bethany Thor – video
Medical Mentoring – Personalized lecture and counseling – Chul Hwan Lee – slides & video
Women and MPN – Marina Peed – video
Australia – isolated by geography & population size – Jolanda Visser – video
Working collaboratively with MPN Doctors – Cheryl Jacobs – Petruk – slides & video
Volunteer regional fundraising organizers – Maz Campbell-Drew – video
World CML day – Giora Scharf – slides & video
Day 2
Medical Session #2 Update on Clinical trial
Current Active Trials: Status, & prospects – Dr. Claire Harrison – slides
Update on mutations: – more depth on the MPN biology (MPN 201) what are the known mutations investigated now & implications in terms of clinical disease – Dr. Saghi Ghaffari – slides
New frontiers & approaches: non-mutation inhibiting therapy strategies – Dr. Mary Frances McMullin – slides & video
Advocacy Session #2: The Empowerment & Professionalization of Advocates
Journey to a professional and empowered advocate – Alfonso Aguarón – slides & video
Professionalizing Patients – Šarūnas Narbutas – slides & video
Patients participating in the R&D process – a panel discussion – Dr. Claire Harrison, Dr. Mary Frances McMullin, Šarūnas Narbutas, Alfonso Aguarón, Novartis- Amber Spierer and Incyte- Dave Dubinsky – video
Medical Session #3: Guidelines of treatment & Oxford style debate
To Treat Dr. Reinier Raymakers or Not to Treat- Dr. Mary Frances McMullin
Oxford style debate and panel consisting of Dr. Claire Harrison, Dr. Mary Frances McMullin, Dr. Reinier Raymakers – slides & video
State of play across the globe: no standardized treatment guidelines for MPN’s. Talk: what are the current efforts to create them – Dr. Claire Harrison – slides & video
Advocacy Session #3: Patients & Doctor Communications
Doctor – Patient relationship – Prof. Ketti Mazzocco – slides
Introduction to Role Plays – Prof. Ketti Mazzocco – slides
Role Play – Dr. Claire Harrison playing the role of patient and Jon Mathias playing the Dr
Panel discussion: Dr. Claire Harrison, Dr. Mary Frances McMullin, Dr. Reinier Raymakers, Prof. Ketti Mazzocco, Jon, Ilse and Peter
Day 3
Advocacy Session #4: Market Place (Breakout sessions)
Brain storm of MPN Advocates Network- Jon Mathias & Cheryl Jacobs – Petruk – video
Daily living with an MPN- Marina Sampees Peed – video
Public Relations working with media – Bill Crowley – video
Medical Session #4: In support of research
Chairs: Felice Bombaci & Bill Crowley
Patient Registry (MPN research foundation) update on the registry project. / other registries elsewhere / Can MPNAN help or contribute to it – Dr. Claire Harrison and Lindsey Whyte – CH slides, LW slides & video
Change your prognosis: patients’ involvement in research- The Dutch experience – Dr. Reinier Raymakers – video
Clinical data–Mosaic study – Epidemiology data in MPN – Dr. Mary Frances McMullin – slides & video
Q & A – Closing Remarks
Jon Mathias & Cheryl and Bill – video