July 2026

Patients often hear similar-sounding terms: neuroendocrine tumor, neuroendocrine carcinoma, NET, NEC, high-grade, poorly differentiated, well-differentiated. It can be confusing, especially when the words all include “neuroendocrine.”

One question we hear from this community is:

Learn about the differences between neuroendocrine tumors (NETs) and neuroendocrine carcinoma (NEC) in the latest blog in our You Ask, NETRF Answers series.  

When someone is diagnosed with metastatic neuroendocrine cancer, one of the most confusing questions can be: Why would doctors still talk about surgery if the cancer has already spread?

Two recent scientific papers help explain why this question remains unsettled.

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Clinical trial news in neuroendocrine cancer is moving quickly. In this roundup, we highlight recent developments across neuroendocrine tumors (NETs) and neuroendocrine carcinomas (NECs), including a CAR T-cell therapy trial now pre-screening patients with NETs, new radiopharmaceutical therapy data, and growing interest in DLL3-targeted therapies for high-grade neuroendocrine cancers.

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A newly published study in The Journal of Clinical Investigation is a strong example of why foundational research makes a difference. The study, first-authored by Pratik N.P. Singh, PhD, and led by researchers including Ramesh Shivdasani, MD, PhD, examined small-intestinal neuroendocrine tumors, or SI-NETs, in relation to the normal cells in the intestine that they most closely resemble. NETRF supported this work through a Peterson Accelerator Award to the late Dr. Qiao Zhou, PhD, and Dr. Shivdasani.

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In June, NETRF hosted a special Research Webinar featuring three leaders advancing the future of neuroendocrine cancer research. Dr. Anna Greene, NETRF's Chief Scientific Officer, opened the webinar with a state of the science update, highlighting the remarkable momentum across the field and why there are many reasons to be optimistic. 

Dr. Tijana Jovanovic-Talisman of City of Hope discussed her study of extracellular vesicles as an early detection tool, while Dr. William Hwang of Massachusetts General Hospital and Harvard Medical School explained his work uncovering how nerves influence pancreatic neuroendocrine tumors.

You're invited to watch the webinar recording for an inside look at the innovative research bringing us closer to earlier detection, better treatments, and cures.

We recently spoke with John Metzcar, PhD, president of AMEND USA (the Association for Multiple Endocrine Neoplasia Disorders), bioinformatics researcher, and  neuroendocrine cancer patient. 

John offers a unique perspective as both a MEN patient and a cancer researcher.  He shares his hopes for the near future of neuroendocrine cancer research, his experience as a patient, and why finding community is so important. 

Read the Q&A

In this Thrivership series, you'll hear from patients on the challenges and the triumphs of living with neuroendocrine cancer. Their stories remind us that Thrivership is not about having all the answers or pretending the journey is easy. It is about embracing hope, adapting to change, finding meaning, and continuing to live a full and purposeful life in the face of neuroendocrine cancer. We are deeply grateful to Jennifer Rogers Anderson, Paige Corrente, Jackie Dong, Barbara Dunham, Dr. Mark Lewis, Jamie Metzl, Gary Murfin, Jessica Ochoa, and Shari Shultz for generously sharing their experiences. Their honesty and courage will inspire, encourage, and remind others that they are not alone on this journey.

Thank you to everyone who attended NETRF's NET Impact Research and Thrivership Program on June 26, 2026 in Columbus, Ohio. The program brought together patients, caregivers, and healthcare professionals for an inspiring evening of learning, connection, and hope. Through expert presentations, meaningful conversations, and opportunities to engage directly with leading specialists, attendees gained practical information to help navigate life with neuroendocrine cancer while learning about the latest advances in research and treatment. Just as importantly, the event fostered a sense of community.

We extend our sincere gratitude to our co-facilitators, Bhavana Kondra, MD, and Jordan Cloyd, MD, as well as our collaborators at NANETS and our generous event sponsors, Camurus, Curium, Crinetics, RayzeBio, ITM, Lantheus, Boehringer Ingelheim, and Novartis, whose support made this program possible. 

Our 2026 Know Your NETs Patient and Caregiver Virtual Conference, held on July 18, 2026, was a tremendous success, bringing together patients, caregivers, and leading experts from across the neuroendocrine cancer community. Participants received the latest updates on neuroendocrine cancer research, treatment, symptom management, and supportive care while gaining practical knowledge and resources to help them manage their experience with greater confidence.

Thank you to everyone who joined us and helped make this year's conference so meaningful. We extend our sincere gratitude to our co-facilitators, Dr. Xavier Keutgen and Dr. Andy Liao, as well as our co-sponsor, UChicago Medicine. We are also deeply grateful to our generous event sponsors, AbbVie, Curium, Crinetics, Exelixis,RayzeBio, ITM, Lantheus, Boehringer Ingelheim, and Novartis, whose support made this program possible.

Know Your NETs recordings are now available on Youtube! Browse the playlist to watch individual sessions or the full program. 

Cancer Support Community (CSC), a global nonprofit offering support, education, and navigation for those affected by cancer, is inviting neuroendocrine tumor (NET) patients and caregivers to share feedback on educational materials about radioligand therapy (RLT), also known as PRRT. NETRF has also provided input to CSC on this project.

Your feedback will help CSC better understand what matters most to patients and caregivers when it comes to treatment education.

Who can participate:

Ready to share your perspective? The survey will be open through August 7.

For more than 26 years, Paul Queenan has hosted a charity golf tournament on Cape Cod, inspired by a cause that has long been close to his family's heart. After his son was born with a cleft palate, Paul began supporting Smile Train, an organization that provides free cleft surgery and comprehensive cleft care to children around the world.

Paul Queenan (center) with family and friends at his annual charity golf tournament. 

In 2023, Paul's family's story took another unexpected turn when he lost his wife of 32 years, Carolyn, to neuroendocrine cancer after a courageous seven-year journey with the disease. Wanting to honor Carolyn's memory and help advance research for future patients, Paul expanded the tournament's mission to include NETRF. Today, proceeds are shared between Smile Train and NETRF, two causes that have profoundly touched his family.

"I've become engaged with NETRF, helping spread the word about the amazing work you do,” Paul shared. “Carolyn would be proud of what we're doing, educating people about this sneaky, often undetectable, cancer."

This year's tournament was truly a family effort, with Paul's children, Conor, Brendan, and Maggie, along with extended family and friends helping make the event a success. Together, they raised $6,000, benefiting both organizations.

"We had fun doing it," Paul said, "and more importantly, many newcomers learned about NETRF."

Thank you to Paul, his family, and everyone who participated for transforming personal experiences into hope for others. Your generosity is helping improve lives today while investing in the research that will change lives tomorrow.

Across the country and around the world, the NETRF community continues to turn passion into progress. Through walks, tournaments, memorial events, and creative fundraisers, supporters are raising critical funds, increasing awareness, and advancing research. Here are a few upcoming events.

Good Scan Cans Golf Classic
hosted by Jake and Taylor Dawson
August 23, 2026
Elmwood Park Golf Course
Omaha, NE 

Sowing Memories: Community Clean-Up & Bluebonnet Planting in Memory of Ana Carolina Medina Castillo
September 5, 2026
Monarch View Park
Frisco, TX

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
Register and participate anywhere

18th Annual Firsty Family Moonlight Walk in memory of Julie Seltzer-Firsty
October 2026
Palo Alto, CA 

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!

We are deeply grateful to everyone who supported NETRF's June Match Campaign. Together, our community raised more than $267,000 in the month of June, including a generous $100,000 matching gift from Board member Steve Kaufer. Every dollar helps move promising discoveries closer to patients by supporting innovative research aimed at earlier detection, better treatments, and cures for neuroendocrine cancer. Thank you for believing in what's possible, and for making it happen.

This is an opportunity to be part of a passionate, mission-driven organization dedicated to changing the future of neuroendocrine cancer. If you know someone who is organized, enthusiastic, and looking for meaningful work that makes a real difference, we'd love to hear from them.

Join us in advancing earlier detection, better treatments, and cures for neuroendocrine cancer.

View the job description and apply.

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.