MPN Horizons 2020 – MPN Advocates Network

Welcome Message

Day One of the virtual MPN Horizons event took place on Sunday 29^th November 2020 with more than 90 participants from 34 countries.

Attendees benefited from state-of-the-art information on clinical trials, progress in MPN and the latest guidelines for treatment by excellent MPN experts Dr. Ruben Mesa, Prof. Steffen Koschmieder and Prof. Alessandro Maria Vannucchi; and actively participated in the session by raising an array of interesting perspectives.

The Advocacy session also offered very inspirational and practical presentations with lots of different MPN patient advocacy perspectives on thriving during the pandemic from around the world. Werner Zinkand from German MPN-Netzwerk shared his inspirational experience and reminded us all that we are in for a marathon rather than a sprint regarding the pandemic and how it has probably changed how we will communicate.

Next, we heard from Giora Sharf about challenges patients have been facing during the Covid pandemic in Israel and how his organisation Flute of Light helped them by offering several great programmes, including switching all activities to virtual, purchasing thousands of protective face masks for patients in hospitals and even creating the highly appreciated transport programme for all blood cancer patients, as well as providing regular psychosocial online support and workshops to his group.

Jana Pelouchová from Diagnoza Leukemie (Czech Republic) presented by exposing her Atlas of CML in the Eastern European region. A very impressive project and very valuable in a region with great disparities, which could also be implemented for other diseases.

Amy Lane from The Leukemia and Lymphoma Society (USA) shared how her organisation provided direct cash support as well as resources for Covid-19. This is a great example of how an organisation with such a reputation and legacy of decades of service can offer benefits that serve a large community of people thanks to their larger reach and brand identity. Lyat Granati Espinoza spoke on the Max Foundation’s work in Chile to reach MPN patients including a pilot programme that pushes information, support and coaching to people with an MPN. They observed that the disease was not sufficiently understood in this country and this was one idea of how to address this unmet need.

MPN Horizons was organized by MPN Advocates Network and CME Congress.

Contacts for support or questions:

Michelle Woehrle: woehrle@mpn-advocates.net
Natasa Hace: hace@mpn-advocates.net
Moran Roth (CME Congresses): moran@cme-congresses.com

All the videos from MPN 2020 Horizon are available by clicking on our MPN Horizons YouTube channel.

Videos and slides from the presentations are available below.

MPN Mini Horizons 2020

DAY 1: 29 November 2020

Starting at 14:00 time zone of Central European Time (CET)

AGENDA

14:00-14:10
Opening:

Welcome & MPNAN Update
Speakers: Michelle Woehrle & Jon Mathias – video and presentation

14:10-15:40
Medical session #1: Today and Tomorrow in MPN Therapy
Chairs: Jon Mathias and Cheryl Petruk

Current clinical trial landscape for PV, ET and MF
Dr. Ruben Mesa, UT San Antonio, USA – video and presentation

Progression in MPN from ET/PV to MF: What We Know Today
Prof. Steffen Koschmieder, RWTH Aachen, Germany – video and presentation

Guidelines for treating MPNs in 2020-2021 (including Fertility and pregnancy)
Prof. Alessandro Maria Vannucchi, University of Florence, Italy – video and presentation

Q & A – video

15:40-16:00
Break

16:00-17:20
Advocacy Session #1: Best Practices – Surviving and Thriving as a Patient Advocacy Organization during a pandemic and access issues
Chairs: Felice Bombaci and Giora Sharf

Abstract 1: “Communication with Patients Yesterday, Today and Tomorrow”
Werner Zinkand, MPN Netzwerk, Germany – video and presentation

Abstract 2: “Overcoming the challenges of Covid 19 Reality”
Giora Sharf, Flute of Light, Israel – video and presentation

Abstract 3: “The CML Atlas – The Project of Eastern European region”
Jana Pelouchova, Diagnóza leukemie, Czech Republic – video and presentation

Abstract 4: “LLS Pandemic Program and Service Offerings”
Amy Lane, The Leukemia and Lymphoma Society, USA – video and presentation

Abstract 5: “Day by Day Adherence Program- Support and Orientation project for MPN patients”
Lyat Granati Espinoza, The Max Foundation, Chile – video and presentation

Q & A – video

17:20-17:30
Concluding comments – video

Presentations of nominees for the Steering Committee – Mirjana Babamova
Save the date for the next session and how to vote for Steering Commitee nominees – Werner Zinkand