Use the links below to view the slides or the video of the sessions from MPN Horizons 2016:

Day 1

Opening:

Medical session #1: MPN 101

Joint (CLL and MPN Horizons) Advocacy session #1: Creating and managing a patient organization

  • Challenges when starting out: Ireland CLL Support Group – a Case Study (Michael Rynne) video
  • An established organisation: a case study (Jon Mathias) video slides
  • Vision and Mission, Governance, Board Development, Liability Insurance (Lorna Warwick) video slides

Day 2

Medical Session #2: Diagnostics and Monitoring

  • Diagnosing MPN patients+MPN10 (Ruben Mesa) video slides
  • Understanding your blood work results (Carlos Besses) video slides
  • How to monitor MPN patients (Claire Harrison) video slides

Joint (CLL and MPN Horizons) Advocacy session #2: Market place

  • Fundraising (William Crowley and Werner Zinkand) video
  • Working with Pharma – benefits and pitfalls (Ananda Plate)
  • Planning a Patients Meeting (Felice Bombaci and Jana Pelouchova)
  • Peer to Peer Support (Jon Mathias and Brian Koffman)

Medical Session #3: Treatment and side effects management

  • Current and best available treatments (Claire Harrison) video slides
  • Transplant for MPN (Nicolas Kroeger) video slides
  • The role of the Clinical Nurse Specialist (Yvonne Francis) video slides

Advocacy Session #3 (independent MPN specific) : Best Practice Sharing

  • MPN Research Foundation – Involvement in research (William Crowley) video slides
  • MPN Research Foundation – The registry project (Lindsey Whyte) video (at 10:45) slides
  • MPN Voice UK – working with Health Technology Appraisals (Jon Mathias) video slides
  • Flute of Light Israel – Awareness drive for blood cancer week (Robert Zelig) video slides
  • MPN Belgium – Personal diary (Ilse Jans) video slides
  • Abrale Brazil – Building awareness for MPN and fight for access in low-resource countries (Fernanda de Carvalho Geiger) video slides
  • MPN Alliance Australia – Setting up an MPN patients organisation (Jolanda Visser) video slides
  • MPN Japan – current projects (Kaori Taki) video slides

MPN Advocates Network – priorities discussion – video

Day 3

Medical Session #4: The future and clinical trials in MPN

  • New treatment in the pipeline (Claire Harrison) video slides
  • The stages of a clinical trial (Nicolas Kroeger) video slides
  • New Directions in MPN treatment- Precision medicine, Immunotherapy and CRISPR Gene editing (Ruben Mesa) video slides

Joint (CLL and MPN Horizons) Advocacy session #4: Communications practical aspects for Patient Organisations

  • Social Media (Jan Geissler and Sofia Sa Cardoso) video
  • Branding and marketing (Lorna Warwick) video

Closing Session – video