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 counselling  – 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 participation 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 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

D

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