At the beginning of October, the EUmetriosis community came together in Zagreb, Croatia, for the very first Patient and Public Involvement (PPI) weekend, a major milestone in the project’s journey. For many participants, it was the first time meeting face to face, marking a new chapter where patients, patient organisations, and researchers work together as partners in shaping the future of endometriosis research.
Getting to Know Each Other
The weekend began with a morning of introductions and interactive sessions designed to help everyone connect. Patients, clinicians, and researchers shared their backgrounds, motivations, and hopes for the collaboration.
Together, we explored what PPI means in practice: not just as a concept, but as a way of working that ensures research is guided by real patient perspectives and lived experiences. Discussions covered the role of PPI partners, how to question and understand research, and how patient voices can shape every stage of the research cycle.
“It was wonderful to meet other Endometriosis UK volunteers and people from different organisations, learning how diagnosis and treatment can vary so much between countries.” One patient said.
Diving Into the Science
In the afternoon, each work package (WP) team introduced their area of focus through short, accessible presentations. From diagnostics and treatment pathways to quality of life and patient support, these sessions offered an overview of the scientific breadth within EUmetriosis.
One patient shared:
“I really valued the chance to speak with researchers who were open and eager to hear about our lived experiences, ensuring that patient voices help shape the work underway. There was such a strong sense of collaboration and hope.”
Researcher and PHD student, Chloé Beaussart, University of Louvain team, Belgium, pointed out:
“These discussions were both stimulating and productive, enabling participants to identify areas where their experiences and interests could contribute most and be best served.”
A lively “marketplace” session followed, giving patients the chance to visit each WP station, ask questions, and engage directly with researchers. These exchanges brought science to life, sparking conversations about priorities, challenges, and how patient experiences can guide research questions.
Building Teams
On the second day, participants selected the work packages that resonated most with their interests and experiences. This step transformed conversations into active collaborations. Each group began planning how they would stay connected, contribute insights, and ensure that patient priorities remain central throughout the project.
Looking Ahead Together
Attendees shared that they found the Zagreb weekend productive and deeply inspiring, with patients bringing valuable insight, questions, and reflections that challenged and enriched the research teams’ perspectives. Researchers, in turn, shared their scientific expertise and enthusiasm for working side by side with those directly affected by endometriosis. By the end of the weekend, the group left Zagreb energised and united with a clearer vision of how lived experience and research innovation can come together to drive change.
This first PPI meeting set the tone for the work ahead: one of collaboration, empathy, and shared discovery. Together, EUmetriosis partners are demonstrating that by listening, learning, and co-creating, we can build a future where endometriosis research reflects and responds to the needs of the people it aims to help.
“It truly felt like research being done for us, not just about us.”
– One patient reflected.