Neuroendocrine Cancer on the Rise:
What the Latest Research Shows |
A major new study published in JAMA Network Open by Arvind Dasari, MD, MS, and colleagues provides a comprehensive update on the state of neuroendocrine neoplasms (NENs), which include well-differentiated neuroendocrine tumors (NETs) and poorly differentiated neuroendocrine carcinomas (NECs), in the United States. The findings are striking. Analyzing over 145,000 cases across decades, this represents the most complete picture yet of how NENs are impacting Americans today. Read more.
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A New Genetic Clue to Aggressive Pancreatic Neuroendocrine Tumors |
Pancreatic neuroendocrine tumors (PanNETs) are rare and tricky. Some grow slowly and never cause trouble, while others spread quickly and become life-threatening. Fortunately, a newly identified genetic signal may help predict and manage high-risk cases. Read more.
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Charting the Future of Neuroendocrine Cancer Research |
As the world’s leading funder of neuroendocrine cancer research, NETRF is committed to driving groundbreaking science, fostering scientific collaboration, and fueling the discovery of improved treatments and curative therapies that save lives. Read more about our roadmap to achieve this mission.
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A New Consensus: Shedding Light on NET G3 Care |
We're excited to share insights from a new ENETS (European Neuroendocrine Tumor Society) position statement, published in the Journal of Neuroendocrinology, addressing a complex and important topic: the treatment of Grade 3 well-differentiated neuroendocrine tumors (NET G3) of the gastroenteropancreatic tract. Read more.
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Embracing the ‘Just Be’ Lifestyle: A Conversation with Burt Rosen |
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When Burt Rosen was diagnosed with both an advanced PNET (Pancreatic Neuroendocrine Tumor) and Kidney Cancer (Renal Clear Cell Carcinoma), he decided it was time to live more presently and focus his efforts on something incredibly fulfilling: helping fellow patients.
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In this month’s NETRF Thrivership Series, we’ll focus on practical tools for building resilience, coping with uncertainty, and managing stress. Together, we will reflect on identifying your personal “anchors” that help keep you grounded, and your “lighthouses” that provide guidance and hope when the path ahead feels unclear.
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This Spanish translation of "Caring for the Neuroendocrine Carcinoma Caregiver" sheds light on the emotional and physical toll of supporting a loved one through this aggressive cancer—and why caregiver self-care is essential.
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El cuidado del cuidador de un paciente con carcinoma neuroendocrino arroja luz sobre el costo emocional y físico de apoyar a un ser querido que atraviesa este cáncer agresivo y por qué el autocuidado del cuidador es esencial.
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Make Your Voice Heard: Share Your Experience with NET/NEC Care |
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This is your opportunity to be part of a global effort to improve neuroendocrine cancer care. The 2nd Survey of Challenges in Access to Diagnostics and Treatment for NET Patients (SCAN2)—launched by the International Neuroendocrine Cancer Alliance (INCA)—is gathering insights from NET patients, caregivers, and healthcare professionals to better understand the real-world challenges in diagnosis, treatment, and ongoing care.
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| Honoring Matt Griffin: First Annual Matt’s 2-Miler Raises $12,000 |
On Saturday, September 13, the first annual Matt’s 2-Miler Road Race was held in South Boston, MA, to raise funds for NETRF in memory of Matthew Griffin, who died from pancreatic neuroendocrine cancer a year and a half ago. Over 130 runners completed the two-mile course through Boston’s Seaport District on a beautiful fall afternoon, raising more than $12,000 for NETRF.
Matt, a Providence College graduate and avid Boston sports fan, loved soccer and baseball and had a passion for running. He met challenges with determination and grace, inspiring everyone around him with his strong faith.
This past spring, his wife, Abby, together with family and friends, formed a committee and worked all summer to bring Matt’s 2-Miler to life. After the race, the community gathered at Lord Hobo Brewing Company in the Seaport to share food, raise a glass, and celebrate Matt’s legacy.
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NETRF is deeply grateful to Abby, the organizing committee, and every runner, donor, and supporter who made this wonderful event possible. Congratulations and thank you.
Interested in organizing a community fundraising event in support of NETRF? Please contact Steve Perna at steve.perna@netrf.org.
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Join or Support a Community Event |
Together we make a difference — join us at a community event to support NETRF at one of these locations around the country, or take part from afar by supporting the events online through their auctions.
Frank DeBenedetto Golf Tournament
Hosted by Gina and Marie DeBenedetto
Tuesday, September 30, 2025
Knob Hill Golf Club, Manalapan Township, NJ
16th Annual Firsty Family Moonlight Walk
Hosted by Wayne Firsty in memory of Julie Seltzer-Firsty
Friday, October 3, 2025
Palo Alto Baylands, Palo Alto, CA
Celebration for Sheryl
Hosted by Jim Jungsten
Saturday, November 1, 2025
North Ridge Country Club, Fair Oaks, CA
effNETs Fundraiser (Golf Tournament and Reception)
Hosted by Chris & Jessica Ochoa
Friday, November 21, 2025
Stoneybrook West Golf Course, Winter Garden, FL
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How to Host Your Own Event |
Interested in hosting an event of your own? Join our Community Events Webinar on October 8th. To register, contact Steve Perna at steve.perna@netrf.org
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NETRF Fosters Learning and Community in Birmingham |
NETRF brought the NET Impact Thrivership & Research Education Program to Alabama for the first time on September 13th, welcoming patients and caregivers to the University of Alabama at Birmingham for a wonderful evening of learning and connection. Read more.
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Sharing Knowledge, Driving Change: Highlights from the INCA Summit |
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Representatives from 25 neuroendocrine cancer advocacy groups, including NETRF, gathered earlier this month in Sofia, Bulgaria, for the 13th INCA (International Neuroendocrine Cancer Alliance) Summit. INCA is the global voice of NET patients, offering educational resources in 12 languages, encouraging healthcare providers to “Think NENs” when evaluating symptoms, and working to improve access to treatment worldwide.
Read more.
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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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