MPN Horizons 2022 Hybrid Conference: Learn. Share. Grow.
18 – 20 November 2022, Netanya, Israel
MPN Advocates Network (MPN AN) held its first hybrid conference. From 18th to 20th November 2022, the 7th International MPN Horizons 22 Hybrid Conference took place in Netanya, Israel. The two-and-half-day conference brought together close to 80 representatives (in person and virtually) of patient advocacy groups from around 20 countries to Learn, Share and Grow.
“We want patients to have access to information where they live – to live well with their MPN,” said Giora Sharf, in opening MPN Horizons 2022 in Netanya, Israel, where he lives and serves on the steering committee for the MPN Advocates Network (MPNAN). “This is an ambitious mission,” he said, encouraging each attendee to take back to their communities the inspiration and information from Horizons.
One major theme discussed in multiple sessions was the different challenges in treatment access around the globe, particularly between small and larger countries, and those with low-to-moderate and high incomes.
“Maybe we build clusters – an idea to make a larger market,” offered Werner Zinkand, chair of MPN AN and representing MPN patients and advocates in Germany. The idea would be to create large regional groups centered around their common issues. The power of numbers would be leveraged to make more impactful progress than a smaller or less wealthy country might have the ability to do independently.
Other important themes included:
Patients have power and they should use it.
- Educated patients are better able to advocate for themselves, for access to new, better, even earlier treatments based on the current science.
- Patient voices must be heard by the pharmaceutical industry in order to ensure that drug development, including clinical trial protocols, reflect their knowledge and concerns.
Advocates can play a broader role.
- Patient advocates need to create opportunities to present the patient perspective to biopharma, clinicians, and government representatives who make decisions about access to and cost of medications and other treatments.
- Clinical trials need to become more diverse and available in low-to-moderate income countries. Advocates can open this dialogue and continue to pursue results with industry and government to help meet this challenge.
What if:
- MPNs were treated like other chronic diseases, i.e., high blood pressure or diabetes?
Successful advocacy work in some countries was more easily modeled in others, i.e. how persistence in Australia led to access to Pegasys (interferon)? - MPN interest by more biopharmaceutical companies was transferred to commitment to broaden access in more countries?
- Decisions toward certain therapies, including stem cell transplantation, could be accurately driven by genetic factors, such as mutation?
- More patients understood what their physicians know (and don’t know) about their diagnosis, treatment options, and prognosis based on current available therapies?
- More people with MPN were accurately diagnosed, earlier, through better informed practitioners, and use of bone marrow biopsy for confirmation?
- MPNs were thought of as another cardiovascular co-morbidity (present at the same time), similar to high blood pressure, as blood clots associated with MPNs relate to cardiovascular risk?
- Patients were encouraged to take more control of their own MPN complications with lifestyle changes, such as diet, exercise, and smoking cessation?
- More MPN patients had affordable or free access to psychiatric counseling, since MPNs impact a person’s whole health and up to 25% report depression symptoms?
- Other specialists and general practitioners were better educated about MPNs, had access to shared electronic medical records, used scoring systems to recognize existing and changing symptoms, and treated patients holistically?
Based on the daily feedback we were receiving from our members, the hybrid event was a huge success. MPN Advocates Network still retains the uniqueness of the MPN Community it created, and we are still connected globally.
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 Videos are available now
All presentations and videos from MPN Horizons 2022 are available now!
Have a look at the interactive conversations with international leaders in MPN treatment and research, and the presentations by MPN advocates who share state-of-the art practices, as well as continued challenges and growing solutions.
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.
MPN Horizons 2022 Hybrid Conference: Programme
DAY 1
Welcome
Werner Zinkand, Giora Sharf & Claire Harrison – Video –
MPN AN Update (Virtually)
Speaker: Jonathan Mathias – Video – PDF
Advocacy Session 1: Regional Meetings reports
- Western & Eastern Europe – Speakers: Werner Zinkand & Felice Bombaci – Video –
- Australia & Asia – Speakers: Ken Young & Param Puthen – Video –
- North & Latin America – Speakers: Kapila Viges & Lyat Granati Espinosa – Video –
Medical Session 1: Challenges still exist in MPNs
- Progression and mutations
Speaker: Martin Ellis – Video – PDF – - Diagnosing MPNs
Speaker: Naveen Pemmaraju – Video – PDF – - Comorbidities in MPNs
Speaker: Gabriela Hobbs – Video – PDF –
Advocacy Session 2: Best practice from MPN community
- MPN Stichting, Netherlands: Using A social media platform for MPN Patients
Speaker: Johannes Hoogland – Video – PDF – - The Canadian MPN Research Foundation: MPN Genie – Quality of Life APP for Patients, Physicians, Researchers (Virtually)
Speaker: Cheryl A. Petruk – Video – PDF – - AIPAMM Italy: Assessing self-care behaviours in people living with myeloproliferative neoplasms: A research study by the Italian Patient Association
Speaker: Antonella Barone – Video – PDF – - Communicating for Change: the conversation around a rare chronic cancer
Speaker: Ruth Fein Revell – Video – PDF – - Halil Haor, Israel: Psych-Social support for MPN patients in Israel
Speaker: Keren Latinsku – Video – PDF – - MPN Voice UK: Community Led Fundraising
Speaker: Debbie Street – Video – PDF –
DAY 2
Medical Session 2: Novel therapies in MPNs
- Past and Future of MPN treatment
Speaker: Naveen Pemmaraju – Video –PDF – - New medications – Different types of mechanism of action of inhibitors (Virtually)
Speaker: Ruben Mesa – Video – PDF – - Updated guidelines for MPN
Speaker: Gabriela Hobbs – Video – PDF –
Advocacy Session 3: Challenges with living with a chronic disease
- Psychological issues (Tools for advocate to support people with MPNs, patients, the burden on the patient, on the doctor as well)
Speaker: Guy Tavori – Video – PDF – - “The right to be forgotten” (Virtually)
Speaker: Françoise Meunier – Video – - QOL of MPN patients as shown by the global survey (Virtually)
Speaker: Jonathan Mathias – Video – PDF –
Advocacy Session 4: Patient organisation’s collaboration with pharma
- Pharma Representative:
Speaker: Avi Matan, Abbvie CEO – Video – - Compliance offier:
Speaker: Liat Mednik – Video – - Patient Advocate:
Speaker: Werner Zinkand – Video – PDF –
Medical Session 3: Effective complimentary therapies for MPNs
- Inflammation in MPN (Immune response)
Speaker: Gabriela Hobbs – Video – PDF – - Nutrition
Speaker: Nathalie Cook – Video – PDF – - Exercise and Fitness/Yoga in MPNS (Virtually)
Speaker: Ruben Mesa – Video – PDF –
DAY 3
Advocacy Session 5: From theory to reality
- NCCN Patient Guidelines (Virtually)
Speaker: Lindsey Whyte – Video – PDF – - Basic Health Economics
Speaker: Meir Pugatch – Video – PDF – - Access to treatment in low-income countries (Virtually)
Speakers: Oliver Karanfilski – Video –
Medical session 4: Personalized medicine in MPNs
- Artificial Intelligence in hematology (Virtually)
Speaker: Peter Horvath – Video – - Alternative of bone marrow biopsy (Virtually)
Speaker: Edoardo Benedetti – Video – - Oxford style debate: Late-stage Myelofibrosis. Transplant or not?
Speakers: YES: Martin Ellis – Video – PDF – / NO: Naveen Pemmaraju – Video – PDF –
Best poster award & Closing Remarks – Video –
– MPN Steering Committee –
The Conference Programme was governed by the MPN steering committee consisting of MPN patient advocates from North America, Latin America, Asia and Pacific, Western Europe, and Eastern Europe. A big thank you to all of you for your fantastic work to contribute to the very successful MPN Horizons once again!
- Werner Zinkand – Chairperson, MPN-Netzwerk Germany
- 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 Stefkova, email: doneva@mpn-advocates.net
– Sponsorship Acknowledgement –
We would like to thank our sponsors for providing unconditional educational funding. Without their support, this conference would not be possible:
- Novartis
- GSK
- AOP Health
- Abbvie
- Bristol-Myers Squibb
- Leukemia & Lymphoma Society
- Incyte
Until the next MPN Horizons!