CDCN

Castleman Disease Collaborative Network

Overview

As Project Manager for the Castleman Disease Collaborative Network (CDCN), a global rare disease organization founded by Dr. David Fajgenbaum at the University of Pennsylvania, I helped organize an international summit bringing together over 200 patients, physicians, and researchers. The event aimed to bridge patient advocacy with translational research to accelerate progress in rare disease diagnosis and treatment.

Project Manager – International Patient Advocacy and Research Coordination

Project Focus

Castleman disease is a rare lymphoproliferative disorder that often leaves patients without clear treatment paths due to its heterogeneity and limited awareness among clinicians. The summit sought to close this gap by fostering dialogue between patients, researchers, and clinicians, aligning scientific advances with patient needs.

My Contributions

Collaborated directly with Dr. Fajgenbaum and the CDCN leadership team to coordinate summit logistics, research presentations, and patient sessions.
Managed outreach and communication for international attendees, ensuring accessibility across time zones and formats (in-person and virtual)
Oversaw scheduling, travel coordination, and technical support for research presentations and Q&A sessions.
Collected patient feedback to improve post-summit resources and engagement strategies.

Outcomes & Impact

The summit strengthened CDCN’s global patient-researcher network and generated new collaborations for ongoing clinical studies. My work enhanced patient experience and facilitated smoother knowledge exchange among stakeholders, reinforcing the organization’s commitment to community-driven science.

Reflection

Working with CDCN taught me how deeply policy, empathy, and research are intertwined in rare disease advocacy. Seeing patients meet the scientists studying their conditions reshaped how I think about translational research—it is not just about discovery, but about delivering hope. The experience grounded my vision of medicine as both a science and a social responsibility