MPN Horizons 2021: Learn. Share. Grow.
12 – 14 November 2021, Virtual Conference
MPN Advocates Network (MPN AN) 6th International MPN Horizons Virtual Conference 2021 attracted high interest with more than 150 registrations from 50 countries from all over the world. The 6th MPN Horizons Conference Programme consisted of 3 half days with around 60 daily participants.
For the first time our members came together outside of the Programme to attend the virtual regional sessions, where we were able to continue sharing ideas, exchange information on how COVID-19 has impacted each region, what they can do, to overcome challenges, and how they can work together to strengthen their organisations and what can MPNAN do to help its members grow and engage with the network so that together we can empower each region.
The Poster Room on the MPN Horizons Platform enabled 7 Patient Organisations to showcase their 2020-2021 yearly activities. We would like to thank each of them and encourage them to continue with these incredible support systems they have established.
The daily feedback we were receiving from our members showed that the virtual event was a huge success even though we were not able to meet in person this year. The uniqueness of the MPN Community that MPN Advocates Network created, was still felt and connected us from all corners of the globe. We hope that next year we may get back to some normality and of course, we will continue with our established success of Horizons and be able to see you in person.
The meeting doesn’t just give us simply medicinal understanding and advocacy training – we feel that consistently, the meeting has developed a phenomenal network crossing oceans and seas and reaching all continents around the globe to improve the life of patients and enable new and existing patient groups. Our meeting has transformed into a unique multi-cultural family.
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 and Video streams are available now <-
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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 Webstream” below or watch the following.
MPN Horizons 2021: Learn. Share. Grow.
12 – 14 November 2021, Virtual Conference
DAY 1
MPN 101 – What are MPNs? – Prof. Martin Ellis – PDF – Video
Opening
Welcome – Werner Zinkand, Chair of MPN AN & Giora Sharf
MPN AN Update – Jon Mathias & Felice Bombaci
Medical Session #1: The future of MPNs
- Besremi: The New Interferon – Prof. Heinz Gisslinger – PDF – Video –
- Future of MPN New Drugs – Prof. Ruben Mesa – PDF – Video –
- Update to Current Clinical Trials – Prof. Claire Harrison – PDF – Video –
Q & A
Medical and Advocacy Session #1: Covid and MPN – What have we learned?
- The Main Finding Of Connection Between Covid 19 and MPNs, including Vaccines – Tiziano Barbui – PDF – Video –
Q & A
- How Patient Groups Engage With Their Communities in Covid Times – Best practices
- Role of Data and Technology in Patient Engagement – Digital tools for the New Reality – Jonathan Mathias – PDF – Video –
- How To Use New media to Increase Your Engagement With The Patient Community During Covid – Andrew Schorr – PDF – Video –
- Managing our blood disorder during the times of COVID-19 – Aashray Paul – PDF – Video –
- Facing the pandemic with technology – Felipe Tapia – PDF – Video –
Q&A
DAY 2
Medical Session #2: Today and Tomorrow in MPN Therapy
- Status of Genetic Testing and Other Biomarkers – Prof. Gregor Hoermann – PDF – Video –
- Key Criteria for Disease Progression Beyond Fibrotic and Leukemic Transformation in Each of the MPNs? How can we prevent? – Dr. Andrew Kuykendall – PDF – Video –
- The role of Transplant in MPNs- Doctors and patients’ Perspective – Nicolaus Kröger – PDF –Video – & Joachim Urmelt – PDF – Video –
Q & A
Advocacy Session #2: Living well with MPN
- Nutrition – Prof. Angela Fleischman – PDF – Video –
& Nathalie Cook, dietician with PV – PDF – Video - Evidence-Based Approach to Use Complementary Strategies – Prof. Krisstina Gowin – PDF – Video
- Living with MPN Fatigue – Dr. Elizabeth Pearson & Ashleigh Bradford – PDF – Video
Q&A
Regional meetings summary – Feedback
- North America – Kapila Viges
- South America – Lyat Granati Espinosa
- Australia and Asia – Param Puthem & Ken Young
- Europe West – Werner Zinkand, Felice Bombaci & Jon Mathias
- Europe East – Mirjana Babamova
DAY 3
Medical Session #3: Special cases in MPNs
- MPN in Young Patients – Under 40 years old – Prof. Eva Lengfelder – PDF – Video –
- Pregnancy in MPN – Prof. Martin Grießhammer – PDF – Video –
- Comorbidities in MPNs – Prof. Claire Harrison – PDF – Video –
Q&A
Advocacy Session #3: MPN Next Steps and Future
- The Voice of Younger MPN patients – Alice Watson – PDF – Video –
Lennart Rusch – PDF – Video –
Caroline Thomas – PDF – Video –
Q & A
- Involvement of Patient Advocates in HTA – Werner Zinkand – PDF – Video –
Q & A
Q&A
Best poster award and concluding remarks – Werner Zinkand and Mirjana Babamova
– MPN Steering Committee –
The Programme was governed by a global steering committee consisting of MPN patient advocates from North America, Latin America, Asia and Pacific, Western Europe, and Eastern Europe. Thank you so much to all of you for your fantastic work to contribute to the very successful MPN Horizons 2021!
- Werner Zinkand – Chairperson, MPN-Netzwerk Germany
- Mirjana Babamova – Treasurer, HEMA, Macedonia
- Felice Bombaci – Gruppo AIL Pazienti LMC, Italy
- Lyat Granati Espinosa – Max Foundation, Chile
- Jon Mathias – MPN Voice, UK
- Giora Sharf – LePaf Representative and Israeli Flute of Light Patients Organization, Israel
- Param Puthen – Friends of Max, India
- Kapila Viges – MPN Research Foundation, USA
- Ken Young – MPN Alliance, Australia
– MPN Management Team –
- Marija Doneva: Programme Manager: doneva@mpn-advocates.net
– Sponsorship Acknowledgement –
We would like to thank the following organisations for providing unconditional educational funding. Without their support, this conference would not be possible:
Novartis Oncology (Initiating Sponsor) Sierra Oncology
AOP Orphan Focus on Rare Diseases Incyte
PharmaEssentia Constellation Pharmaceuticals