May 2026

This year’s conference, co-sponsored by UChicago Medicine, will focus on helping patients and caregivers better understand every stage of the neuroendocrine cancer journey, from diagnosis and treatment decision-making to long-term management and thrivership. The program will feature leading experts discussing the latest advances in neuroendocrine cancer research and treatment, clinical trials, monitoring and ongoing care, symptom management, and survivorship. Sessions will also explore how multidisciplinary care teams make treatment decisions and include real-world conversations between physicians and patients about navigating treatment options.

Designed to provide practical information, meaningful insights, and opportunities for connection, Know Your NETs will conclude with a live “Ask the Experts” Q&A session. 

A newly published study, Characterization of Small Intestinal Neuroendocrine Tumorlets, led by Eric Nakakura, MD, PhD, and colleagues at the University of California, San Francisco builds on genomic research supported through a NETRF Accelerator Award focused on uncovering the causes of small intestinal neuroendocrine tumors (SI-NETs).

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Through the 2026 Know Your NETs survey, patients and caregivers told us what they most want to understand about neuroendocrine cancer: why diagnosis still takes so long, what new treatments are coming, and more. The questions were practical, urgent, and deeply informed by lived experience. In the first post in this series, we examine the challenges of diagnosing neuroendocrine tumors (NETs). 

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Article author and NETRF Board member Carrie Camino, left, and Anna Greene, NETRF Chief Scientific Officer. 

NETRF Board member and patient advocate Carrie Camino recently attended the American Association of Cancer Research (AACR) as part of the Scientist↔Survivor Program 2026. She was one of 42 patient advocates selected to attend a series of cancer research lectures led by leading-edge researchers to educate and inspire action in support of cancer patients.

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The American Association for Cancer Research Annual Meeting, is one of the largest and most important cancer research meetings in the world. This year’s meeting, held in April in San Diego, hosted more than 23,000 researchers, clinicians, health care professionals, survivors, patients, advocates, and industry leaders from 74 countries and territories to share the latest advances in cancer science and medicine. Learn about the meeting's major themes from Dr. Anna Greene. 

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Neuroendocrine neoplasms (NENs) can be difficult to detect, and many patients face long delays before receiving an accurate diagnosis. In many cases, NENs are not found until they have advanced or spread. Detecting NENs earlier could change that trajectory. When disease is found sooner, surgery may offer the best chance for long-term control and, in some cases, a cure.To address this challenge, NETRF recently launched its first Early Detection Request for Applications. 

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Join us in Columbus, Ohio for a free, in-person program to hear from leading experts in neuroendocrine cancer and make meaningful connections with fellow patients and caregivers. Learn about the latest in treatment and research as well as practical strategies for thrivership. 

When someone is diagnosed with cancer, one of the first questions is simple: What happens next? But for many, that question doesn’t come with a clear answer. Instead, it opens the door to something much harder to navigate: uncertainty.

In this episode of NETWise, we explore what it means to live in that space of the unknown. From the shock of diagnosis to the ongoing reality of treatment decisions, scan results, and everything in between, uncertainty becomes a constant companion for many people living with neuroendocrine cancer.

This month’s Thrivership Series focuses on Advanced Directives and the importance of planning ahead with clarity, compassion, and intention. Advanced directives are one of the greatest gifts a person can give to themselves and the people they love. They protect your voice, preserve your values, and create clarity during moments often filled with fear and uncertainty. Rather than signaling giving up, advanced directives help ensure your wishes, dignity, and definition of quality of life remain at the center of your care. Join us as we explore practical steps, meaningful conversations, and ways to approach this topic as part of living fully and intentionally.

On May 3, a community of commitment and purpose was unmasked in New York City as NETRF supporters and special friends gathered for Masquerade, an immersive musical experience inspired by The Phantom of the Opera. The event was a joyful opportunity to celebrate the partnerships and community helping advance neuroendocrine cancer research.

During the reception, NETRF Board member Tony Detre reflected on the production behind Masquerade, comparing it to the progress being made in neuroendocrine cancer research. He shared that bringing something so ambitious to life required bold ideas, collaboration, and many people working together toward what once seemed impossible -- much like the work being done through the NETRF community today.

We are deeply grateful to Tony Detre & Yvette Kovatz and Elaine & David Nord, whose generosity made this memorable event possible. We also extend our sincere thanks to NETRF Board President Josh Mailman and his wife, Juliette Linzer, for attending the event, warmly welcoming guests, and helping lead meaningful conversations throughout the afternoon.

As the weather warms, our community is coming together in inspiring ways to support neuroendocrine cancer research. Across the country, dedicated supporters are hosting events that raise awareness, build connection, and help fuel critical research.

Katherine Mueller Music Festival, hosted by the Katherine’s Light Foundation
June 13, 2026
Severna Park Taphouse
Severna Park, MD

Paul Queenan Golf Tournament 
June 19, 2026
Hyannis Golf Club
Hyannis, MA

Matt's 2-Miler, hosted by Abby Griffin
September 2026
Boston, MA

Frank DeBenedetto Memorial Golf Tournament
September 29, 2026
Nob Hill Golf Course
Manalapan, NJ

A Walk for Brandon, hosted by the Raabe Family
October 2 - November 10, 2026
Virtual Walk
Midland, TX & Cincinnati, OH

Be sure to check your inbox in June for the chance to double your impact. Together we can unlock new breakthroughs in early detection, advanced therapies, and personalized medicine. Don’t miss this opportunity!

NET Research Foundation
100 Hancock Street,
Third floor
Quincy, MA 02171
(617) 946-1780 info@netrf.org

The mission of the Neuroendocrine Tumor Research Foundation is to fund research to discover cures and more effective treatments for neuroendocrine cancer. NETRF is the largest global funder of neuroendocrine research and a preeminent resource for expert patient education and support.



NETRF is a 501(c)(3) organization. All donations are tax-deductible to the extent allowed by law.