On March 29, 2025, patients and families from six countries gathered in Frankfurt for Chordoma Community Day Germany—a day dedicated to connection, education, and support for those affected by chordoma.
The day opened with a video message from Josh Sommer, Executive Director of the Chordoma Foundation, who joined virtually from Durham, NC, to share updates on the Foundation’s work and efforts to improve patient outcomes worldwide.
We were then moved by heartfelt stories from Georg Raspe, who shared his personal experience living with chordoma, and Natalie Matthews, who offered a parent’s perspective after her son Phineas was diagnosed with the disease.
After a short break, Dorothee Baumfalk led a powerful journaling workshop. She introduced journaling as a simple yet effective tool to manage anxiety and stress. It was inspiring to see how participants, using just the prompt “brain dump,” began writing freely for ten minutes—creating space for reflection and emotional clarity.
Following lunch, attendees heard from three experts advancing chordoma care:
Dr. Stefan Fröhling (NCT Heidelberg / DKFZ) shared how translational research is driving the development of new, individualized treatment strategies—particularly through molecular profiling and targeted therapies.
Dr. Verena Gaidzik (University Hospital Ulm) gave insights into the use of personalized medicine in both inpatient and outpatient settings to optimize treatment strategies for chordoma patients.
Dr. Katharina Seidensaal (University Hospital Heidelberg) explained the role of radiation therapy in chordoma, including a comparison between proton and carbon-ion therapies. She also presented ongoing research focused on improving long-term outcomes.
The day concluded with a calming and accessible chair yoga session—something participants could take home and use whenever they need a moment to breathe, reset, or relax.
We extend our heartfelt thanks to Irene Badura, our Ambassador for Germany, whose tireless dedication provides vital support to patients and families across Germany and other German-speaking countries. In addition to offering one-on-one support, Irene regularly attends conferences to deepen her understanding of the rare disease landscape and better advocate for the chordoma community. She also moderates our bi-monthly Zoom Café and co-moderates the German WhatsApp support group.
Special thanks as well to Anja Eurich, who created and moderates the WhatsApp group—bringing together patients and families to share their experiences, ask questions, and find support in one another.
A warm thank-you to all who joined us. The sense of community, learning, and mutual support made this event truly special.
Recordings
In case you missed it, here are the recordings. Though they’re not top audio quality, we're sharing them because each speaker delivered unique and inspiring insights that offer hope in their own unique ways.
Chordoma Community Day Germany playlist:
Josh Sommer - Chordoma Foundation updates
Georg Raspe - chordoma patient
Natalie Matthews - parent of patient
Dr. Verena Gaidzik (University of Ulm) - Präzisionsonkologie in der Versorgungh
Questions?
Contact us at events@chordoma.org.