MPN Horizons 2023 Conference

MPN Horizons 2023 Conference: Understanding the New Complexity of MPNs

13 – 15 October 2023, Zagreb, Croatia

MPN Advocates Network (MPN AN) held its 8th MPN Horizons Conference from 13th to 15th October 2023 in Zagreb, Croatia. The conference brought together around 60 representatives of patient advocacy groups from around 30 countries over the course of 3 days to Learn, Share and Grow.

During the conference, attendees gained medicinal understanding and advocacy training. They were able to continue sharing ideas, exchange information on what patient organisations are doing to overcome challenges, and how they can work together to strengthen their organisations.

The daily feedback we were receiving from our members showed that the event was a huge success. Everyone felt the uniqueness of the MPN Community that MPN Advocates Network created, from all corners of the globe. You may see all photos HERE!

MPN Horizons is a wholly community-run and multi-sponsored conference. The annual conference is run by the MPN Advocates Network, hosted by the non-profit, Swiss-based, and patient-driven “Leukemia Patient Advocates Foundation”.

Presentations & Videos are available now

Please take note that the speakers have authorized MPN Advocates Network to disburse the presentations in PDF format only on this site, however, it isn’t permitted to transfer the PDF files elsewhere! If you would like to share the slides, kindly do this by connecting to this page or the documents on this site!

To view all the presentations just Click on “PDF”. Should you wish to translate the selected presentation, please contact us by email at the following doneva@mpn-advocates.net and request the PowerPoint file. This will make it easier for you to translate the presentation into the language of your choice.

To view individual sessions, click on “Video” below or watch the following.

MPN Horizons Conference 2023
Understanding the New Complexity of MPNs
Learn.Share.Grow

Friday 13th October 2023

Welcome
Werner Zinkand, Giora Sharf & Marko Lucijanić – Video, PDF

MPN AN Update
Kapila Viges – Video, PDF

Advocacy Session 1: Regional Meetings – Breakout session and report – Video

• Western & Eastern Europe – Werner Zinkand, Giora Sharf & Dražen Vincek
• Australia, Asia & Africa – Ken Young & Bahija Gouimi
• North & Latin America – Kapila Viges & Lyat Granati Espinosa

Medical Session 1: New Challenges in Diagnosing MPN
Chairs: Kapila Viges and Werner Zinkand

• Diagnostic Criteria for ET, PV & MF, biological aspects
  Speaker: Susanne Isfort – Video, PDF
• New learnings in diagnostics, CHIP
  Speaker: Martin Ellis – Virtually – Video, PDF
• How does a genetic understanding of MPNs affect prognosis for patients? Prognosis between ET, PV & MF
  Speaker: Claire Harrison – Virtually – Video, PDF

Saturday 14th October 2023

Medical Session 2: The Complexity and Combinations in Treating MPNs
Chairs: Amy Lane and Jon Mathias

• PV – What is the current standard of treatment?
  Speaker: Gabriela Hobbs – Virtually – Video, PDF
• MF – Combinations in treatment
  Speaker: Naveen Pemmaraju – Virtually – Video
• ET – The future of treatment
  Speaker: Claire Harrison – Video, PDF
• Cardiovascular risk factors in MPN patients
  Speaker: Marko Lucijanić – Video, PDF

Medical Session 3: Special Problems in MPNs
Chairs: Kapila Viges & Lyat Granati Espinosa

• The growing complexity of MPN mutations
  Speaker: Martin Ellis – Virtually – Video, PDF
• How to talk to patients about MPN?
  Speaker: Gabriela Hobbs – Virtually – Video, PDF
• Special cases: skin cancers & thrombosis
  Speaker: Claire Harrison – Video, PDF

Advocacy Session 2: Patient Engagement in drug development and clinical trials
Chairs: Sara Douglas and Dražen Vincek

• The Life cycle of drug development
  Speaker: Scott Weir – Virtually – Video, PDF
• PROs – What is the role of the patient organisation using the PROs?
  Speaker: Zack Pemberton-Whiteley – Virtually – Video
• The role of patients in the design of a clinical trials
  Speaker: Giora Sharf – Virtually – Video

Advocacy Session 3: Marketplace – Empowering Patient Advocates
Introducing the session: Ken Young

• Using social media in advocacy
  Speaker: Anil Nagpal – Video, PDF
• Measuring Efficiency and setting up key measurement points (KPIs)
  Speaker: Vicki Idzinski – Virtually – Video
• How can we collaborate with other patient organisations?
  Speaker: Jonathan Mathias – Video

Sunday 15th October 2023

Advocacy Session 4: Living with a chronic, life threatening, rare condition
Chairs: Jon Mathias and Werner Zinkand

• What is advocacy?
  Speaker: Jon Mathias – Video, PDF
• The Caregiver’s role and how are they involved in the journey
  Speaker: Guy Tavori – Virtually – Video
• Complementary therapies
  Speaker: Susanne Isfort – Virtually – Video, PDF

Advocacy Session 5: Best Practise Session – Video
Chairs: Lyat Granati Espinosa and Ken Young

• Patient Health Engagement & Sources of Information on Myeloproliferative Neoplasms: A Survey Conducted by the Italian Patient Association (AIPAMM)
  Speaker: Valentina Biagioli – PDF
• Dar AL AMAL, one year of services Cancer patients in Morocco
  Speaker: Bahija Gouimi – PDF
• Patient advocates in cancer research (Association of Cancer Patients in Finland)
  Speaker: Matti Santalahti – PDF
• RED SEPTEMBER: Blood Cancer Awareness Month in France (VIVRE AVEC UNE NMP)
  Speaker: Karin Tourmente-Leroux – PDF
• The buddy system of MPN Voice
  Speaker: Jonathan Mathias – PDF
• 3 key stakeholders’ engagement in research
  Speaker: Kapila Viges – PDF

Best poster award – Video
Completion of Feedback Questionnaire
Q & A – Closing Remarks
Werner Zinkand and Kapila Viges