From January 22nd to 24th, 2025, the MPN Educational Roundtables brought together a dynamic global community, uniting the 3P’s (Patient, Physicians, and Pharmaceutical companies) from over seven countries.
Throughout the three-day event, participants explored the specific needs of MPN patients across various regions, addressing local challenges, unmet needs, and the complexities of healthcare systems in Europe and North America. This collaboration reinforced the belief that unity is strength. The roundtables were a valuable opportunity to tackle issues such as mental health, taboo topics, and the impact of these on MPN care.
Content guide
Day 1: Exploring MPN Challenges and Advancements Across Australia, Myelofibrosis Patients, and the USA
AUSTRALIA: MPN Patient's Journey
During the Australia Roundtable at the MPN Educational Roundtables 2025, Charlie, an MPN patient from Australia, shared her experience with Myelofibrosis (MF). She discussed the challenges of living with fatigue and pain, and how switching from Pegasys to Jakavi helped improve her quality of life. Charlie also touched on her participation in clinical trials, highlighting their importance for the future of MPN treatments and the ongoing struggles with medication side effects, including diarrhea and vomiting.
The conversation shifted to the impact of MPN on mental health and family dynamics, particularly on young people. Charlie emphasized the financial strain of managing the disease and the need for better relationships with healthcare providers. She called for greater awareness, better access to treatments, and the importance of collaboration between patients, physicians, and pharmaceutical companies to improve patient care and support.
Part 1: Interview with Charlie, an MPN patient
MYELOFIBROSIS PATIENTS: Patient Stories and Insights
Discussions focused on living with myelofibrosis, symptom management, fatigue, and relationships with healthcare professionals. The importance of a good relationship with doctors, especially regarding symptom management and medication, was highlighted. The group also explored the mental and physical challenges associated with myelofibrosis and the ongoing search for effective treatments.
The roundtable also explored how nutrition, exercise, and holistic methods can help manage symptoms and improve quality of life. Patients shared their experiences with mental health care, including the role of meditation and gentle exercises in improving their well-being. The session highlighted the need for better awareness and collaboration between patients, doctors, and pharmaceutical companies to improve treatment options and quality of life for those living with MF.
Part 1: Introduction MF Group Roundtable: Interview with Alberto, Leonor and Judit
USA: Exploring the Impact of Essential Thrombocythemia and Fatigue Management
The USA Roundtable focused on the challenges faced by patients with Essential Thrombocythemia (ET), including managing symptoms and treatment options. Participants discussed experiences with Hydrea and Interferon, and the potential benefits of clinical trials. Prof. Lucia Masarova provided insights into recent studies and the role of combination therapies, stressing the need for global collaboration in MPN treatment and the concerns around the global Pegasys shortage.
Fatigue, a key symptom in MPN patients, was highlighted as a major factor affecting quality of life. The roundtable explored different methods for managing fatigue and discussed the emotional and physical toll of treatments like Interferon. Prof. Masarova and patients shared insights into the importance of open communication between patients and healthcare providers to improve MPN care.
Part 1: Living with Essential Thrombocythemia - Alex
Day 2: Overcoming the Silent Struggles
THE NETHERLANDS: Empowering MPN Patients
Day 2 of the MPN Educational Roundtables kicked off with a powerful roundtable from the Netherlands, where patients shared their experiences of living with Myeloproliferative Neoplasms (MPN). The conversation highlighted the need for holistic care, addressing not only physical symptoms like fatigue and pain management, but also the mental health challenges that come with living with MPN.
Marisa, a patient with Polycythemia Vera, discussed her journey overcoming severe fatigue and symptom management after switching from Pegasys to Jakavi, noting a significant improvement in her quality of life. Similarly, Marije, living with Essential Thrombocythemia (ET), shared her emotional struggles due to treatment side effects and how Hydrea improved her mental well-being, emphasizing the importance of psychological support for MPN patients. The session concluded with a focus on the need for better communication and integrated care to improve the lives of MPN patients globally.
Part 1: A Story of Superation: Marisa, a patient living in The Netherlands
YOUNG ADULTS: Challenges and Mental Health
The Young Adults roundtable at the MPN Educational Roundtables 2025 provided a platform for young patients living with MPN to share their personal journeys and the challenges they face. Judit, living with Myelofibrosis (MF), discussed how the medication Pegasys negatively affected her mental health and how switching to Jakavi helped her manage her condition better. Esteban, a young patient diagnosed with Essential Thrombocythemia (ET), shared how exercise and adjustments in medication helped him feel almost normal, despite experiencing liver toxicity. Maricruz, a Polycythemia Vera patient from Austria, highlighted the mental struggles she faces and emphasized the importance of community support in coping with the disease.
The roundtable also explored mental health concerns and the difficulties of being a young patient with an invisible illness. The participants discussed the emotional toll of living with MPN and the challenges of managing symptoms like fatigue and menstruation issues. Judit and Maricruz shared their insights into how they manage their conditions with the support of their doctors and psychological help, while also dealing with the struggles of family and mental health. The session ended with a call for more support for young patients, urging for more awareness, better communication with healthcare providers, and a united effort to tackle the challenges they face.
Part 1: Young Patients living with Myelofibrosis
SPAIN: Stories of Resilience and Treatment Challenges
The Spain roundtable of the MPN Educational Roundtables 2025 offered an insightful exchange between patients living with MPN, highlighting the challenges and resilience experienced by each individual. Puy, a patient diagnosed with Essential Thrombocythemia (ET), shared her journey of overcoming severe fatigue and headaches. After initially taking Anagrelide, she switched to Pegasys, but the medication caused flu-like symptoms, leading her to spend a month bedridden. She discussed the emotional and physical challenges of managing MPN, emphasizing the importance of support groups and finding balance through nutrition and movement.
The roundtable also featured Aroa, a mother caring for a child with Polycythemia Vera (PV), who spoke about the emotional toll of managing her child’s health and the impact of treatment side effects like hypothyroidism and splenomegaly. Paco, a patient with PV evolving into Myelofibrosis (MF), shared his story of chronic pain and the difficulty of finding effective treatment. The group discussed the use of Ruxolitinib and potential future treatment combinations, with a focus on improving the quality of life and exercise routines tailored to each individual’s needs. The session concluded with an ongoing conversation about personalized care and the importance of patient empowerment in managing MPN.
Part 1: Vanesa and her story living with MF
Day 3: Mental Health and Holistic Care
GERMANY: Managing MPN with Empathy and Holistic Care
On Day 3 of the MPN Educational Roundtables 2025, participants from Germany engaged in a thoughtful discussion focused on the holistic care of MPN patients. Armin, an MPN advocate, shared his experience of living with MPN, detailing his struggles with pruritus and a thrombus. Despite external appearances, Armin highlighted the invisible challenges, including severe concentration problems and the psychological toll of living with a JAK2 mutation. The importance of empathy from both physicians and patients was underscored, with Prof. Dr. Markus Radsak emphasizing the need for listening and understanding, not just relying on lab results.
The roundtable also delved into treatment options, particularly Ruxolitinib, and explored how clinical trials and bone marrow transplants offer hope for those with Myelofibrosis. Ulrike, a Polycythemia Vera (PV) patient, shared how Jakavi has significantly improved her quality of life, enabling her to engage in exercise and follow a balanced diet. Discussions also covered the importance of fatigue management, sport, and nutrition as integral parts of a comprehensive treatment plan. The group recognized the necessity of collaboration between patients, physicians, and pharmaceutical companies to drive forward research and find better solutions for managing symptoms, including fatigue and mental health challenges. The session concluded with a focus on holistic health, incorporating breathing techniques, nutrition, and alternative therapies to help patients manage their condition and improve their overall well-being.
Part 1: Story of Armin Dadgar, an MPN Advocate
SWITZERLAND: Managing Fatigue and Collaboration in MPN Care
The MPN Educational Roundtables 2025 session in Switzerland focused on the significant challenges faced by patients living with Polycythemia Vera (PV), particularly fatigue and depression. Stephan, an oncologist living with PV, shared his personal struggle with the disease. Despite being a healthcare professional, he faced tremendous fatigue, making it difficult to maintain his full workload, which led to a 70% reduction in his work hours. Stephan highlighted how he had to carefully manage his energy levels each day, and how his condition forced him to rethink daily routines. His use of Interferon and vitamins helped, but he also had to learn strategies to cope with the exhaustion that felt like running a marathon with no energy.
The roundtable also featured Susanne, a PV patient with the JAK2 mutation, who struggled with the debilitating effects of headaches, fatigue, and itching. Her symptoms worsened due to Pegasys treatment, but after starting Jakavi, she experienced significant improvements, including a reduction in itching and a return of energy. Both patients discussed how fatigue remains one of the most challenging symptoms of MPNs, with no simple way to measure or manage it. The group shared insights on how nutrition, exercise, and maintaining a positive mindset can help alleviate some of the fatigue. They emphasized the need for collaboration between patients, physicians, and pharmaceutical companies, stressing that sharing stories and uniting efforts can lead to better solutions and more effective treatments for managing the debilitating fatigue that comes with MPNs.
POLAND: Managing MPN Treatment, Fatigue, and Mental Health
The Poland Roundtable session, led by Prof. Marta Sobas, focused on crucial aspects of MPN care, with a strong emphasis on managing fatigue and mental health challenges. Prof. Sobas discussed the different approaches to treating Polycythemia Vera (PV) and myelofibrosis (MF), including the use of Hydrea, Pegasys, and Besremi. She stressed the importance of personalized care, particularly when managing fatigue and mental health concerns, and pointed out the risks of Interferon for certain patients. Paulina, a patient with PV, shared her positive shift in mental health after changing to Besremi, highlighting the significant improvement she experienced in both her symptoms and overall well-being.
The roundtable also addressed fatigue, with Prof. Sobas explaining the differences between fatigue in PV and MF. Daniel, a myelofibrosis patient who recently underwent a stem cell transplant, spoke about his recovery journey and the decision to undergo the transplant for better quality of life. The discussion extended to the need for better collaboration among healthcare professionals and patient groups globally, especially when it comes to young adults with MPN. Topics such as pregnancy, menstruation, and the challenges faced by younger patients were highlighted. The session concluded with a call for unity among global patient advocacy groups, reinforcing that together, we are stronger in advancing MPN care.
Part 1: Introduction to the Poland Roundtable
The MPN Educational Roundtables 2025 achieved its objective of fostering insightful discussions, uncovering critical perspectives, and strengthening the global MPN community. This event stands as a testament to the collective commitment towards improving the quality of life for individuals navigating the complexities of Myeloproliferative Neoplasms worldwide.
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