Peter Löffelhardt Brings the MPN patient voice to the European Parliament
The founder of Global MPN Scientific Foundation joined a European blood cancer policy dialogue in Brussels, calling for meaningful patient involvement in decisions that affect their care
On September 30, 2026, Peter Löffelhardt, founder of Global MPN Scientific Foundation, participated at the European Parliament in “Blood Cancers and CLL on the European Agenda: From Recognition to Action,” organized by the European CLL Association (ECLLA).
The title of the meeting reflected one of the main ideas Peter wanted to bring to the discussion. Of all the words in it, one stood out to him: action.
Listening to patients matters. Turning that listening into meaningful change matters even more.
From living with PV to building a community
Peter began with his own experience. He was diagnosed with polycythemia vera (PV) approximately 35 years ago, at a time when, as he recalled, the MPN landscape was almost a “black hole”, with limited information, few patient networks and little organized advocacy.
That experience became the starting point for work that gradually moved from national initiatives toward an increasingly international vision.
Peter described how patients from Latin America began joining communities initially developed in Spain because they were looking for information and for contact with others living with an MPN. For him, this demonstrated that a rare disease cannot be approached only within national borders.
Bringing patients, physicians and industry together
One of the ideas behind Global MPN was to bring together what Peter describes as the “three Ps”: patients, physicians and pharmaceutical companies.
The aim was to create a space where these groups could talk to each other, understand different needs and work together. This philosophy remains at the heart of the Global MPN Symposium, which brings the international MPN community together each year.
In Brussels, another dimension entered that conversation: healthcare policy. The ECLLA meeting focused on European inequalities in diagnosis, referral, evidence-based treatment, clinical trials, innovation and psychosocial support.
Patient involvement must be meaningful
Peter also raised an important question: patient consultation should not become a box-ticking exercise. During his intervention, he referred to processes where the experience of only a very small number of patients is considered, despite the fact that every person experiences their disease differently.
His message was clear: understanding a patient community requires listening to more people and more diverse experiences, and meaningfully incorporating those perspectives into research, clinical trials and decision-making.
Tools created by patients, for patients
Peter also highlighted initiatives developed around Global MPN to strengthen the patient voice. These include MPN World, designed to connect patients across countries; MPN Journal, created by patients to help track symptoms and experiences; and the development of MPN Universe, intended to further expand opportunities for connection and participation.
He also emphasized the importance of looking beyond medication alone and supporting wellbeing, physical activity, nutrition and other complementary practices alongside appropriate medical care.
From experience to action
Peter's participation in Brussels brought the reality of myeloproliferative neoplasms into a broader European conversation about blood cancers.
More importantly, it reinforced a simple principle: The patient experience should not be decorative in healthcare decision-making. It should be there from the beginning.
Stay connected with the international community
If you would like to continue learning and connecting with others living with MPN, we invite you to explore the initiatives of Global MPN.
📰 Subscribe to our newsletter to receive updates about research, webinars and community resources.
📝 Register for MPN Journal, a free tool created by patients for patients to track symptoms, treatments and experiences.https://mpn-journal.com
🌿 Explore the Wellbeing Project and discover activities designed to support quality of life.https://www.globalmpn.org/wellbeing-project
Together, we can help make reliable information more accessible to people living with MPN and their families.
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