Neuroendocrine Tumor Research Foundation

09/18/2025

Share Your Experience and Perspectives to Advance and Care.

This is your opportunity to be part of a global effort to improve 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 neuroendocrine cancer patients, caregivers, and healthcare professionals to better understand the real-world challenges in diagnosis, treatment, and ongoing care.

Your input helps identify gaps in access to care and shapes a stronger future for the neuroendocrine cancer community.

Take the survey: https://incalliance.org/scan2025/

NET Cancer Day

09/15/2025

Birmingham delivered! Yesterday's NET Impact program sparked exactly the kind of meaningful dialogue between experts and the patient and caregiver community that drives real progress. Thank you to our incredible speakers, engaged attendees, and generous sponsors for making it all possible. Events like these are a testament to the fact that, together, we can achieve .

Thanks again to our sponsors: Curium, ITM, Crinetics Pharmaceuticals, Exelixis, Novartis and Lantheus

09/13/2025

NET Impact 2025 in Birmingham is underway! We're delighted to welcome patients and caregivers for a meaningful program of learning and connection.

09/11/2025

The European Neuroendocrine Tumor Society recently released important new guidelines on nutrition support for patients with in a position statement published in the Journal of Neuroendocrinology

Key findings include:

• 38-61% of NEN patients suffer from malnutrition/sarcopenia - often undiagnosed
• Routine nutritional screening is now recommended as standard care
• Personalized dietary interventions can improve treatment tolerance & outcomes
• Micronutrient deficiencies (B12, B3, Vitamin D) are especially common

This fills a major gap in understanding of neuroendocrine cancer care and management where nutrition has been overlooked, despite its impact on patient wellbeing and survival.

Learn more about the statement on our blog. https://netrf.org/2025/08/18/bridging-the-nutritional-gap-in-neuroendocrine-neoplasms-an-enets-position-statement/

09/10/2025

When Barbara Dunham was diagnosed with neuroendocrine cancer, her instincts as a long-time educator kicked in. She set to work learning as much as she could about her disease and went on to share her knowledge with fellow patients, spreading awareness and hope. In Barbara's words, "We have cancer. Cancer doesn't have us." Read Barbara's story. https://netrf.org/2025/08/18/educated-and-empowered-barbara-dunhams-neuroendocrine-cancer-journey/

By Anne-Marie Green, Director of Digital Communications As a 19-year veteran educator, Dr. Barbara Dunham’s learning instincts were set in motion when she was diagnosed with neuroendocrine carcinoma. She felt compelled to fully educate herself about the disease and share her knowledge and experien...

09/08/2025

CEO Elyse Gellerman is proudly representing NETRF at the in Sofia, Bulgaria this week! Elyse presented the early results of our "Pay It Forward" pilot initiative, which extends the reach of our patient guide to primary care physicians, particularly in areas with limited access to neuroendocrine specialists. By fostering these connections, the program seeks to improve awareness, resulting in early detection, timely interventions, and better patient outcomes.

Special thanks to Harry Proudfoot and the Walking with Jane Foundation for their support of this pilot program.

09/06/2025

See you in Birmingham! In just one week we'll be in town for NET Impact, our FREE, in-person patient and caregiver education program. Don't miss out on this meaningful opportunity to hear from leading experts on neuroendocrine cancer, connect with fellow community members, and gain practical advice on managing the disease.

Haven't registered yet? There's still time to sign up online: https://netrf.org/events/net-impact-2025-patient-education-program-birmingham-al/

Thank you to our sponsors for helping to make this event possible:

, ITM Radiopharma Crinetics Pharmaceuticals Curium Pharma, Novartis, Lantheus

09/03/2025

Dr. Benjamin Viglianti, the recipient of the 2023 NETRF Investigator Award, recently published a state-of-the-art analysis of molecular imaging technologies and their application in diagnosing and managing neuroendocrine neoplasms (NENs) in the journal Diagnostic and Interventional Imaging. He and his colleagues detail how advancements in imaging are enabling more precise diagnoses and better treatment planning for patients with NENs. Learn more about the study on our blog. https://netrf.org/2025/08/18/expanding-the-frontier-of-neuroendocrine-tumor-imaging/

Your support for NETRF makes research discoveries like these possible, and fuels

08/29/2025

See you in Birmingham in just over two weeks!

There is still limited availability to join us in person in Birmingham, Alabama for patient and caregiver education and connection.

Browse the agenda and learn more and register here: https://netrf.org/events/net-impact-2025-patient-education-program-birmingham-al/

08/28/2025

✨It's Thrivership Thursday ✨
Grief isn’t linear—it comes in waves. It’s not something we “get over,” but something we carry with love.
Thriving doesn’t mean pushing grief aside. It means honoring it, giving it space, and still choosing to live fully in the moments we’re given. 💛

08/22/2025

Don't Miss Your Chance to See Us in Birmingham!

Join us IN PERSON in Birmingham, Alabama on September 13 for an informative and engaging program for the neuroendocrine cancer patient and caregiver community.

Featuring:

*Neuroendocrine cancer research developments
*Advances in nuclear medicine and PRRT
*Clinical trials and treatment options
*Multidisciplinary care approaches
*Mental health and stress management
*Future of translational research
*An opportunity to meet fellow patients and caregivers

Space is limited. Register now: https://netrf.org/events/net-impact-2025-patient-education-program-birmingham-al/

08/19/2025

This incredible team is dedicated to making life better for everyone impacted by 💛

Today, we’re pausing to connect at our all-staff meeting—because teamwork is how great ideas turn into impact.

Discover what this is working on at www.netrf.org