Reflecting on the European Competence Network on Mastocytosis (ECNM) Meeting in Berlin

by Jessica Fraser

Back in September, I had the incredible opportunity to travel to Berlin, Germany, to attend the European Competence Network on Mastocytosis (ECNM) meeting.  This experience was nothing short of inspiring—filled with learning, collaboration, and renewed hope for the future.

Expanding Our Knowledge

The sessions were truly fascinating, offering groundbreaking research findings and new perspectives that deepened my understanding of mast cell diseases. Hearing directly from leading experts provided a clearer picture of where mast cell disease research is headed. It was a privilege to sit in on presentations by dedicated researchers, whose work reflects both their commitment to finding solutions and their awareness of the unique struggles patients face.

Bringing this knowledge back to our organization feels like an essential step in our mission to support, educate, and advocate for those affected by mast cell diseases. Each insight gained feels like a powerful tool in shaping how we can better serve our community.

Building Global Connections

One of the most inspiring parts of my time in Berlin was connecting with other mast cell disease patient organizations from around the world. Hearing about their efforts, successes, and challenges highlighted the shared nature of our work and gave me new ideas for supporting our community.

We shared stories and strategies, finding that many of our challenges—raising awareness, securing research funding, and ensuring access to accurate information and effective care—were universal. These conversations reinforced our shared mission and strengthened the global network of those working to make a difference for patients.

Moving Forward with Renewed Purpose

The knowledge I gained and the relationships I built will play an important role in shaping TMS’s strategies in the coming year. I’m eager to incorporate these learnings into our upcoming programs, webinars, and resources—each designed to empower patients, support caregivers, and educate the public and medical community about mast cell diseases.

Attending the ECNM meeting was a powerful reminder of the importance of global collaboration and the incredible impact that passionate individuals can have when working together to solve complex problems.

I’m deeply grateful to the ECNM meeting planners for inviting patient representatives to be part of this very special gathering. As I take these insights and connections forward, I’m more motivated than ever to continue advancing TMS’s mission to support and uplift the mast cell disease community.