SAVE THE DATE: MPN Horizons 2021

Date: 12 – 14 November 2021


Dear members & friends of MPN Advocates Network,

We are happy to announce dates for MPN Horizons 2021. Please block your calendars for November, 12.-14.11 2021. This year will be the 6th MPN Horizons and considering the current circumstances, the Steering Committee had decided that this year MPN Horizons will be a virtual conference online attendance options.

The conference will be live-streamed, and all keynote, panel, and oral sessions will be recorded and available on-demand following the event. MPN Advocates Network is committed to providing the most up-to-date information and resources to enable our members to continue to Learn, Share & Grow within the MPN community.

We will keep you posted and will send an invitation to register to all in few weeks. In the meantime, please do not to hesitate to contact us with any questions you might have at hace@mpn-advocates.net.

We very much look forward to welcoming you at MPN Horizons 2021!

Kind Regards,
Natasa Hace on behalf of the MPN Advocates Network Steering Committee

 

MPN Horizons 2021

12-14 November 2021

Starting at 12:45 Central European Time (CET)

 


DRAFT AGENDA

DAY 1: Friday 12th November 2021

12:00-12:45
MPN 101-What are MPNs?” – Prof. Martin Ellis, pre-recorded session available on request to first-time participants

14:00-14:10
Opening:

  • Welcome by Werner Zinkand, Chair of MPN AN and Giora Sharf
  • MPN AN Update – Jon Mathias and Felice Bombaci

13:15 13:30
Break

13:30 – 15:00
Medical session #1: The future of MPNs
This session will provide an update to current clinical trials and pre-trial information, future of MPN new drugs and new diagnostic tools.

Chairs: tbc

  • Besremi: The New Interferon (15 min)
    Speaker: Prof. Dr Heinz Gisslinger, Wien, Austria
  • Future of MPN New Drugs (20 min)
    Speaker: Prof. Dr Ruben Mesa, Mays Cancer Center, USA
  • Should Genomic Testing Become The Diagnostic Standard for MPNs (15 min)
    Speaker: Prof. Andrew Perkins, Australian Center for Blood Disease
  • Update to current clinical trials (20 min)
    Speaker: Dr Claire Harrison, Guy’s and St. Thomas’ Hospital, London UK

Q&A 20 min

15:00 15:30
Break

15:30 – 17:00
Medical and Advocacy Session #1: Covid and MPN – What have we learned?
This combined medical and advocacy session will continue conversations on covid 19 and present main findings between viruses like covid and MPNs and in connection with vaccines, especially MRNs types. Session will also address how covid influenced activities of patient groups (fundraising) and present best practices.

Chairs: Param Puthem and Lyat Granati

  • The Main Finding Of Connection Between Covid 19 and MPNs, including Vaccines (20 min) Speaker: Prof Tiziano Barbui, Bergamo, Italy
  • How Patient Groups Engage With Their Communities in Covid Times – Best practices
    • Fundraising in Covid Times – Bahija Gouimi, AMAL, Morocco (10min)
    • Role of Data and Technology in Patient Engagement- Digital tools for the New Reality – Jonathan Mathias, MPN Voice, UK (10 min)
    • How To Use New media to Increase Your Engagement With The Patient Community During Covid? – Andrew Schorr, Patient Power (10min)
    • Best practice from MPN community
      How did your organisation adapt to Covid and what did you learn for the future when the pandemic is over.” (10min)

Q&A 30 min

17:00
End of day 1

 

DAY 2: Saturday 13th November 2021

13:00 – 13:30
Regional meetings summary – Feedback

13:30 – 15:00
Medical session #2: Today and Tomorrow in MPN Therapy

This session will address different ways to prevent progression. How do you do the test and understand that you are progressing or are in a high-risk group? What options are there to prevent its progression, either by a new trial or by a new drug? It will also explore the possibility of transplant from a physician and patient perspective.

Chairs: Kapila Viges and Mirjana Babamova

  • Status of Genetic Testing and Other Biomarkers
    Speaker: Dr. Jyoti Nangalia, Welcome Sanger Institute, UK (20 min)
  • Key Criteria for Disease Progression Beyond Fibrotic and Leukemic Transformation in Each of the MPNs? How can we prevent? (20 min)
    Speaker: Andrew Kuykendall, MD, Molfit Caven Center, Tampa
  • The role of Transplant in MPNs- Doctors and patients’ Perspective (30 min)
    Speakers: Prof Nicolaus Kroeger, Hamburg and Joachim Urmelt

Q&A 20 min

15:00 15:30
Break

15:30 – 17:00
Advocacy Session #2: Living well with MPN
This session will explore how to be well and live well with MPN. What do patients need to know?

Chairs: Lyat Granati Spinoza and tbc

  • Nutrition
    Speaker: Natalie Cook, dietician with PV /Prof Angela Fleischmann, UCLA (20 min)
  • Evidence Based Approach to Use Complementary Strategies (20 min)
    Speaker: Prof. Krisstina Gowin, University of Arizona
  • Living with MPN Fatigue (20 min)
    Speaker: Dr Elizabeth Pearson, Peter MacCallum Cancer Centre, Australia

Q&A 30 min

17:00
End of day 2

 

DAY 3: Sunday 14th November 2021

13:00 – 13:40
Medical session #3: Special cases in MPNs

Chairs: Kapila Viges and Mirjana Babamova

  • MPN in Young Patients – Under 40 years old
    Speaker: Prof.Eva Lengfelder, Manheim Heidelberg, Germany (20min)
  • Pregnancy in MPN
    Speaker: Prof.Martin Griesshammer, Germany (20min)
  • Comorbidities in MPNs
    Speaker: Prof. Claire Harrison, Guy’s and St. Thomas’ Hospital, London UK (20min)

Q&A 30 min

14:30 15:00
Break

15:00 – 16:30
Advocacy Session #3: MPN Next Steps and Future

Chairs: tbc

  • “The Voice of Younger MPN patients”
    Speakers: Alice Watson, Lennart Rusch and Caroline Thomas (30 min)
  • History, Work and Future of MPN RF
    Speaker : Kapila Vignes, MPN RF, USA (15 min)
  • Involvement of Patient Advocate Groups in HTA (15min)
    Speaker:  Werner Zinkand, Germany

Q&A 30 min

16:30 – 17:00
Concluding remarks and questionnaire


End of day 3