Neuroendocrine Cancer Foundation at the 13th INCA Global NET Patient Advocate Summit
- NCF Team
- Oct 4
- 3 min read
The Neuroendocrine Cancer Foundation (NCF) participated in the 13th International Neuroendocrine Cancer Alliance (INCA) Global Patient Advocate Summit in Sofia, Bulgaria, on September 8–9, 2025. NCF was one of 30 representatives from over 25 INCA member organizations worldwide who came together to collaborate on improving neuroendocrine cancer awareness, access to optimal diagnosis and care, and advancing research.
NCF and INCA: A Growing Global Voice
NCF joined INCA in 2022 as its 32nd member. INCA is the global voice for patients with neuroendocrine cancer and genetic syndromes (GenNETs), representing 37 patient advocacy and research groups across 29 countries.
Our connection to INCA is deeply rooted in our history: our late founder Giovanna Imbesi once dreamed of our organization joining this alliance to expand the global voice and reach. Today, that dream has been realized. NCF’s Director of Programs and Outreach, Lisa Yen is currently serving her third year on the INCA Executive Board as Treasurer. We are actively engaged in their programs including the NET Cancer Day awareness campaign, Think NENs Global PCP program, and research bootcamp.
Sharing Best Practices and Inspiring Collaboration
This year marked NCF’s fourth consecutive year attending the Summit. Alongside physician-scientist leaders from the European Neuroendocrine Tumor Society (ENETS), the North American Neuroendocrine Tumor Society (NANETS), and other renowned experts, INCA delegates exchanged best practices, explored ways to strengthen ongoing projects, and generated new ideas to address global gaps in neuroendocrine cancer care. Attendees left the Summit feeling inspired, encouraged, and motivated by the collective efforts of the community.
NCF was honored to present interviews with NET researchers, highlighting best practices and challenges in advancing neuroendocrine cancer research. We also shared our unique approach to making clinical trial information more accessible to patients—complete with practical tips, lessons learned, and a memorable “show-and-tell” of our portable equipment.
Spotlight on Patient Involvement in Research
Dr. Jennifer Chan, President of NANETS, delivered a powerful presentation on the importance of meaningful patient involvement in neuroendocrine cancer research, which has tripled in the past decade. She emphasized the value of collaboration from the earliest stages of research design—for both patients and researchers.
Dr. Chan highlighted NCF’s presentation as a model of collaborative engagement. Her slides also featured our NET VITALS publication in the Journal of Clinical Medicine, underscoring the impact of our work. Read the full article here>>>
We were also grateful for the opportunity to sit down with Dr. Jennifer Chan and Dr. Jaydira Del Rivero (NCI/NIH) for in-depth conversations on:
Advancing Neuroendocrine Cancer Research: Clinical Trials, Patient Involvement, and International Collaboration: A Discussion with Dr. Jennifer Chan and Dr. Del Rivero at the 2025 INCA Summit
2025 Highlights and Future Directions in Neuroendocrine Cancer: An Interview with Dr. Jennifer Chan at the 2025 INCA Summit
Add Your Voice: SCAN 2025 Survey
YOU can help shape the future of neuroendocrine cancer care. Patients, caregivers, and healthcare professionals are invited to participate in the Survey of Challenges in Access for Diagnostics and Treatment for NET Patients (SCAN) 2025. Please share your perspectives by November 30, 2025.
Learn More
For more highlights from the 13th INCA Global NET Patient Advocate Summit, visit INCA’s official blogpost:🔗 Read INCA’s Blogpost.
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