MPN Horizons 2019 – Session Slides and Videos

Day 1

Pre-Conference Session

Opening – Welcome: Jon Mathias and Sofia Sa Cardosa video and presentation

MPN 101: What are MPNs? CBC and bone marrow biopsy – Dr. Martin Ellis– video and presentation

Medical Session 1: The Psycho-Social Impact of an MPN Diagnosis

Patient diagnosis and impact of diagnosis – Dr. Luzia Travadovideo and presentation

Progression to Myelofibrosis and anxiety – Dr. Martin Ellisvideo and presentation and Guy Tavori video and presentation

Tools to reduce anxiety and increase the quality of life  – Dr. Antonio Almeida video and presentation

Advocacy Session 1: The Psycho-Social Impact of an MPN Diagnosis

Caregivers: the impact of a diagnosis on the caregiver – Guy Tavorivideo and presentation

Roleplay: What patients need to know at doctors’ visit and what caregivers need to know at a doctors’ visit – Jon Mathias and Cheryl Petrukvideo

The role of the clinical nurse in dealing with the psychosocial impact on patient and caregiver – Yvonne Francis, RN video and presentation

Day 2

Advocacy Session 2: How to be an Effective Advocate

Facilitated forum of patient advocacy groups – Felice Bombaci and Mirjana Babamovavideo and presentation

How to organize patient organizations from a startup to a mature group – Param Punthenvideo and presentation, Lise-Lott Erikssonvideo and presentation, and Marion “Mas” Campbell-Drewvideo and presentation

Medical Session 2: MPN 301 – More Details on MPN Blood Cancers

Molecular structure alphabet soup: mutations other than JAK/CALR/MPL – Dr. Martin Ellisvideo and presentation

Implications of mutation identification on treatment decisions – Dr. Steffen Koschmieder –  video and presentation

Guidelines update: National Comprehensive Cancer Network (NCCN) – Prof Claire Harrisonvideo and presentation

Medical Session 3: Patient-Reported Outcomes and Patient Engagement in Clinical Trials

The pipeline of treatment options for MPNs – Professor Claire Harrisonvideo and presentation

Clinical Trials: the trials process – Dr. Martin Ellis, Pharma Representative Dr. Steffen Koschmieder and clinical nurse Yvonne Francis, RNvideo

Quality of life and patient-reported outcomes – the role of patient advocacy – Jon Mathiasvideo and presentation

Advocacy Session 3: MPN an Update

Quality of Life Survey – Preliminary Results – Cheryl Petrukvideo and presentation

Landmark 2.0 information – Cheryl Petruk and Transitioning your organization and improving contact between MPN AN and PAGs: Delegates Q&A – Peter Loffelhardtvideo

Day 3

Medical session 4 – Living with an MPN

Recreational Therapies (yoga, exercise, etc.) – Dr. Steffen Koschmiederpresentation

The role of the clinical nurse: Treatment management  – Yvonne Francis, RNvideo and presentation

Treating MPN patients who refuse conventional therapy-tales from the clinic. Illustration of a holistic approach to treatment – Dr. Martin Ellisvideo and presentation

Advocacy Session 4 – Best Practices

Buddy System, United Kingdom – Marion “Mas” Campbell-Drewvideo and presentation

Global MPN Awareness Day – Peter Loffelhardtvideo

Patient Magazine, Korea – Bora Yunvideo and presentation

Closing Remarks

Jon Mathias and Peter Loffelhardt – video