Lorena Arranz: The Power of Patient Engagement in Advancing MPN Research
Lorena Arranz, Group Lead of Faculty of Medicine at UiO, Deputy Director at CRESCO SFF UiO/OUS, shared a post on LinkedIn:
”Last week, I had the opportunity to attend the 6th Global MPN Symposium organized by Global MPNSF and Peter Loffelhardt. I was honored to kick off the meeting discussing the present and future of the blood cancers known as myeloproliferative neoplasms (MPN), including our own research on the pathogenic role and therapeutic potential of targeting inflammation and predisposition genes.
I have returned to the lab inspired, humbled, and energized by the deeper understanding of what real patient engagement looks like. This meeting was not simply a reminder of why our work matters, it opened my eyes to the power of patients leading the conversation, setting priorities, and shaping our research questions.
Among the highlights was the launch of MPN Universe by john hoogland and his team. Their vision is to create one democratic, mandated voice across borders for people living with MPN, able to engage with clinicians, researchers, industry, and regulators with verified patient support. For patients, MPN Universe offers free, anonymous tools in 15 languages to help navigate every aspect of their disease.
Just as powerful was the sense of community: a connection, trust, and shared understanding that can only grow from patients coming together around their lived experience.”
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