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Summary of MPN Educational Roundtables: The Importance of Mental Health

From January 24th to 26th, the MPN Educational Roundtables brought together a diverse community, uniting MPN experts, associations, and patients from more than seven countries


The primary focus was to delve into the quality of life for MPN patients, addressing their unique necessities in each country. This transformative event facilitated discussions among physicians, patients, and organizations from Europe and North America, addressing local challenges, unmet needs, and intricacies within the health systems.


the MPN Educational Roundtables brought together a diverse community, uniting MPN experts, associations, and patients from more than seven countries. 

Content guide



Day 1 - Unveiling Stories and Perspectives


FRANCE

The event started with a spotlight on France, featuring Karin Tourmente, president of Vivre Avec une NMP, and MPN patients sharing profound thoughts on quality of life. 


Following this, Karin Tourmente, delved into her MPN journey, and the importance of taking care physically, mentally and emotionally. Additionally, the session introduced the audience to the intriguing "Septembre Rouge" project of Vivre Avec une NMP, contributing to the diverse range of topics covered.


SPAIN

The subsequent roundtable was Spain, featuring Peter Loffelhardt, president of MPN Spain


Patient perspectives took center stage, with discussions on information disparities between the rest of Europe and Spain. Another aspect explored was the long-term benefits of Interferon, along with addressing the specific challenge known as the allele burden.


CANADA

The last roundtable was Canada with Cheryl Petruk, Caregiver, and CEO of Heal Canada. 


In the Canadian session, MPN patients shared their experiences, and the representative of Canada provided insights into the need for awareness about MPN. The session also covered educational initiatives like the "My Blood, My Health” Program and highlighted the role of digital magazines as a medium for MPN information and education.



Day 2 - Captivating Perspectives


ITALY

Day 2 delved into Italy, led by Antonella Barone, president of AIPAMM, with MPN patients offering diverse perspectives on quality of life, and bone marrow transplant stories


Discussions included perspectives on Pre-MF patient testimony, and different projects that AIPAMM is doing called "Educational project", where one of the objectives is to go throughout Italy educating patients with MPN. 


Various aspects, such as women's health and pregnancy, were explored by different speakers, contributing to a comprehensive and informative session.


THE NETHERLANDS

The Netherlands roundtable provided an engaging discussion with various MPN patients contributing insights from MPN Stichting. 


The focus was on the crucial intersection of mental health and MPN. Speakers shared their experiences, emphasizing the profound impact on mental well-being. Discussions touched upon the challenges posed by the disease to overall quality of life, highlighting the importance of addressing mental health issues within the MPN community.


USA

The day concluded with the USA roundtable, featuring Dr. Angela Fleischman, an MPN expert, and different US MPN patients sharing impactful stories. One of the main topics was the importance of mental health in MPN patients and caregivers.


Dr. Fleischman discussed medication combinations, underlining the significance of a healthy lifestyle. The impact on emotional health was a key theme, with speakers sharing personal journeys and advocating for mental health awareness. 


Discussions also covered fatigue, emotional stability, and ongoing studies, providing a comprehensive overview of the session.



Day 3 - Compelling Closure


SWITZERLAND

The final day commenced with Switzerland roundtables, featuring Dr. Axel Rüfer, a renowned MPN expert, and valuable insights from patients. 


During the Swiss session, patients shared their experiences with MPN. The discussion began with an overview of the Swiss healthcare system by an oncologist, and PV patients. Patient testimonials shed light on the challenges of living with PV, including treatment effects and mental health struggles. The session emphasized the significance of the doctor-patient relationship, with insights from Dr. Axel Rüfer.


SPAIN

The second Spain roundtable, with Dr. Blanca Xicoy, further fostered engaging discussions. 


The Spanish session delved into diverse patient experiences, covering symptoms, treatments, and the emotional impact of MPN. Discussions included challenges like pruritus and highlighted the crucial role of psychological support. Patient testimonials underscored the need for empathy from medical professionals, and the importance of referring to specialized doctors in the case of children with MPN who already have them. Dr. Xicoy provided insights into treatment options and future medications.


GERMANY

The event concluded with the Germany roundtable, showcasing Armin Dadgar, president of MPN-netzwerk, and Dr. Susanne Isfort, an MPN expert. Diverse MPN patients shared impactful stories, wrapping up the MPN Educational Roundtables on a compelling note.


The German session explored patient stories, treatment approaches, and the psychological aspects of MPN. Dr. Susanne Isfort discussed a phase II medication study, emphasized the emotional burden of MPN, and supported the idea of psychological support. The session also highlighted Dr. Isfort's acknowledgment of the importance of patient perspectives in research.



Exclusive Videos Coming Soon!

The MPN Educational Roundtables achieved their objective of fostering insightful discussions, unraveling critical perspectives, and strengthening the global MPN community. This event stands as a testament to the commitment towards improving the quality of life for individuals navigating the complexities of Myeloproliferative Neoplasms worldwide.


Stay tuned for video uploads on our website! Join now to access exclusive content: https://www.gmpnsf.org/join-gmpnsf 

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