What Epigenetics Could Teach Us About Neuroendocrine Tumors |
Why do some neuroendocrine tumors grow slowly for years, while others progress more quickly? Researchers have often looked to changes in DNA for answers. But many well-differentiated neuroendocrine tumors (NETs) have a relatively low mutational burden, and researchers have identified relatively few recurrent cancer-driving mutations compared with many other solid tumors.
This has led scientists to investigate another layer of tumor biology: epigenetics.
Epigenetic mechanisms help control which genes are active, which are quiet, and how strongly they are expressed. A recent review article summarizes what researchers currently know about epigenetic changes in NETs and how these discoveries could eventually improve diagnosis, prognosis, and treatment.
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Chimeric Halts CAR T-cell Trial Enrollment, Shifts Approach |
Many in the neuroendocrine cancer community have been following this trial, so we want to share an update: Chimeric Therapeutics has stopped enrollment and dosing in its Phase 1 CHM CDH17 trial (a CAR T-cell therapy for certain gastrointestinal cancers, including well-differentiated intestinal NETs) after side effects appeared at the highest dose level. Read more about the decision and what's next.
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PanNETs Are Neuroendocrine Cancers |
When it comes to a cancer diagnosis, using precise language is critical. Calling a pancreatic neuronedocrine tumor (PanNET) simply “pancreatic cancer” can direct patients toward information about a disease they do not have, including different survival statistics, treatment approaches, expectations, specialists, and research. That is why precision here is critical. It can shape what patients and caretakers understand and what happens after diagnosis.
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Looking for Answers? Explore Our NETWise Podcast Library |
No matter where you are in your experience with neuroendocrine cancer, questions are bound to come up along the way. NETRF’s NETWise podcast offers a growing library of conversations designed to help you find reliable information when you need it.
NETWise brings together leading neuroendocrine cancer experts, patients, caregivers, and advocates to explore topics that matter to the neuroendocrine cancer community. Have a question about pathology? There’s an episode for that. Want to better understand fatigue, nutrition, genetic screening, or imaging? NETWise has covered those, too. You can also find conversations focused on caregivers, young adults, mental and emotional well-being, and the practical realities of living with neuroendocrine cancer.
The NETWise podcast library is browsable by topic, with categories that include:
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- Treatment options
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Symptoms and side effect management
- Neuroendocrine cancer basics and diagnosis
- Neuroendocrine carcinoma
- Site-specific neuroendocrine cancer
- Adolescents and parenting with neuroendocrine cancer
- Research and innovation
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Lifestyle, wellness and nutrition
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The NETWise podcast is a growing and evolving resource you can return to as your questions and needs change.
Explore the NETWise podcast library and find the topics that matter to you.
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Know Your NETs 2026: Start With the Basics |
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Last month, NETRF’s annual Know Your NETs Patient and Caregiver Conference brought the neuroendocrine cancer community together for a day of learning and connection.
This year’s conference focused on helping patients and caregivers better understand every stage of the neuroendocrine cancer journey and featured leading experts discussing the latest advances in research and treatment, clinical trials, monitoring and ongoing care, symptom management, and survivorship. The sessions also explored how multidisciplinary care teams make treatment decisions and included real-world conversations between physicians and patients.
Over the coming months, we’ll be sharing videos from the conference so you can watch – or revisit – the sessions that are most useful to you.
We’re starting with Neuroendocrine Cancer 101, a pre-conference presentation from Chandrikha Chandrasekharan, MBBS, of MD Anderson Cancer Center. Dr. Chandrasekharan offers a thorough and engaging overview of neuroendocrine cancer to help patients and caregivers better understand the disease and its diagnosis and care.
Whether you’re new to neuroendocrine cancer, looking for a refresher, or helping a loved one navigate a diagnosis, this is a great place to start. Watch Dr. Chandrasekharan’s Neuroendocrine Cancer 101 presentation.
Stay tuned as NETRF shares more presentations from the 2026 Know Your NETs conference in the months ahead.
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A full season of community fundraising is just around the corner! This fall, NETRF supporters will come together in communities near and far to honor loved ones, build awareness, and generate vital support for neuroendocrine cancer research. From walks and golf tournaments to meaningful local gatherings, there are many ways to get involved. Take a look at what’s ahead.
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Sowing Memories: Community Clean-Up & Bluebonnet Planting in Memory of Ana Carolina Medina Castillo
September 5, 2026
Monarch View Park
Frisco, TX
Matt's 2-Miler
hosted by Abby Griffin
September 12, 2026
South Boston, MA
18th Annual Firsty Family Moonlight Walk in memory of Julie Seltzer Firsty
September 25, 2026
Palo Alto, CA
Dan DelVecchio Memorial Walk
September 26, 2026
Grafton High School Stadium
Grafton, 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
In-person and Virtual Walks
Midland, TX & Cincinnati, OH
Thank you to our NETRF community for your support. 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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Members of the NETRF Board of Directors Elaine Nord (left) and Carrie Camino (right) wore their Lindz jeans to a recent Board meeting.
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| The Lindz Jean Raises $28,000 for Neuroendocrine Cancer Research |
The Neuroendocrine Tumor Research Foundation (NETRF) is deeply grateful to Citizens of Humanity for donating $28,000 through the sale of The Lindz, a jean created in honor of Lindsay May Palevsky.
Citizens of Humanity has a longstanding tradition of naming its styles after women who inspire the company. The Lindz was an especially personal addition to that tradition.
Read more
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Did You Know? Giving Just Got Easier
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In 2025, only taxpayers who itemized their deductions could generally claim a federal tax deduction for charitable gifts. Beginning in 2026, individuals who take the standard deduction may also deduct qualifying cash gifts made directly to nonprofits like NETRF, up to $1,000 for individuals or $2,000 for married couples filing jointly.
As you consider your charitable giving at the end of the year, please keep this new benefit in mind. A gift to NETRF can provide a potential tax benefit while helping advance research toward better treatments and cures for neuroendocrine cancer.
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Thank You to Our Summer Intern, Maya Becker |
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NETRF was pleased to host a summer communications intern in our Boston-area office. Maya Becker is a rising senior at University of Massachusetts, Amherst, working towards dual degrees in Communication and Journalism, with a concentration in Public Relations.
During Maya’s time at NETRF, she created social media content, mass email communications, print collateral, and helped with website updates. She also worked on longer-term projects to enhance monthly digital analytics reporting and categorize YouTube content to enhance user experience.
We are grateful to Maya for her contributions this summer and to Elaine and David Nord for their generosity in sponsoring this internship.
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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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