New Data Offer Fresh Insights Into Life with Neuroendocrine Cancer
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A new multi-institutional study provides one of the most comprehensive pictures to date of what life is like for people living with neuroendocrine tumors (NETs). The research, conducted through the NET-PRO cohort and recently published in the Journal of the National Cancer Institute, analyzes the experiences of more than 2,300 patients across the United States. NETRF CEO Elyse Gellerman is a co-author on the paper, as part of a broad, multi-institutional team of researchers and patient advocates.
For the Neuroendocrine Tumor Research Foundation (NETRF), the findings reflect why the patient perspective matters in research. Advancing better treatments for NETs requires not only measuring tumor response or survival, but also understanding symptom burden and the day-to-day impact of the disease.
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Two New Studies Illuminating NET Biology
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Two recent NETRF-funded studies are offering new insight into how neuroendocrine tumors grow, spread, and respond to treatment.
One study suggests a new treatment strategy for gastroenteropancreatic neuroendocrine tumors (GEP-NETs). The other examines why some pancreatic neuroendocrine tumors (PanNETs) behave more aggressively than others.
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A Duck Egg Model Offers a New Way to Study Neuroendocrine Tumors |
At the Neuroendocrine Tumor Research Foundation (NETRF), we support research that can move the field forward, not only by advancing new treatments, but also by creating better tools to study neuroendocrine cancer.
A new NETRF-funded study, now published in Endocrine-Related Cancer, does exactly that.
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Join us for a free, in-person program to learn from leading experts in neuroendocrine cancer and make meaningful connections with fellow patients and caregivers.
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Thank you to the more than 1,100 patients and caregivers from across the United States and internationally who participated in NETRF’s 2026 Annual Patient and Caregiver Survey, sharing their experiences, concerns, and priorities.
These insights are playing an important role in shaping this year’s virtual Know Your NETs Patient and Caregiver Conference, which will take place on Saturday, July 18, 2026.
What we learned
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Episode 53: Understanding Pathology |
This episode of NETWise explores the vital role of pathology in diagnosing and managing neuroendocrine cancers, showing how precise analysis of biopsy tissue guides every step from classification to treatment decisions. By identifying tumor type, grade, differentiation, and biomarkers, pathologists provide crucial insights that shape prognosis and therapy, especially in complex and varied neuroendocrine neoplasms where small differences can greatly affect outcomes. The discussion highlights the challenges of interpreting pathology in these cancers, the value of expert review and second opinions, and the evolving systems used to classify disease.
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Episode 36: NETRF NET Thrivership Series:
Your Voice Matters |
In this episode of the Thrivership Series, we highlight the power of patient and caregiver voices through our annual crowdsourcing survey. Thank you to everyone who participated and shared your experiences, needs, and hopes for the future. What we learned is clear: our community is seeking practical education on treatment options, symptom management, mental health, research updates, and how to live well beyond diagnosis.. Your feedback helps shape future programs and resources, ensuring that the needs of patients and caregivers remain at the heart of everything we do. Your voice matters.
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How One 15 Year-Old Is Channeling Creativity Into Support for Neuroendocrine Cancer Research |
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After losing his mom at age five, Leo Giancola was inspired to do something to support neuroendocrine cancer research. Now a busy high school student, Leo uses his spare time and creativity to fundraise for NETRF in honor of his late mother, Ivette.
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Your Support is Changing What's Possible for Neuroendocrine Cancer
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| When we launched Breakthroughs Today, Cures Tomorrow, we made a promise: accelerate the science that leads to better treatments and, ultimately, cures. The momentum is real. And the numbers prove it.
NETRF’s latest Request for Applications drew an extraordinary response. Letters of intent increased by more than 35%, signaling a field that is energized, engaged, and ready to move promising science forward.
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| Community Leading the Way |
Our community continues to show up in meaningful ways to advance neuroendocrine cancer research. We’re grateful to share a number of upcoming events led by dedicated supporters across the country.
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Katherine Mueller Music Festival, hosted by the Katherine’s Light Foundation
June 13, 2026
Severna Park Taphouse
Severna Park, MD
Frank DeBenedetto Memorial Golf Tournament
September 29, 2026
Nob Hill Golf Course
Manalapan, NJ
Matt's 2-Miler, hosted by Abby Griffin
September 2026
South Boston, MA
A Walk for Brandon, hosted by the Raabe Family
October 2 - November 10, 2026
Virtual Walk
Midland, TX & Cincinnati, OH
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If you’re interested in hosting or getting involved in a community event, please contact Steve Perna at steve.perna@netrf.org. We’d love to work with you!
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| NET Research Foundation
100 Hancock Street,
Third floor
Quincy, MA 02171
(617) 946-1780 info@netrf.org
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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.
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