The Neuroendocrine Tumor Research Foundation (NETRF) marks its 20th anniversary this year, celebrating its growth and success as the largest global funder of neuroendocrine cancer research. NETRF is often the only source of funding for this uncommon cancer.

Twenty years ago, Nancy Lindholm, stunned by a diagnosis of neuroendocrine cancer, gathered a small group of volunteers and researchers to establish the Caring for Carcinoid Foundation. The mission then, as now, is to find treatments and cures for neuroendocrine cancer. In 2015, the Caring for Carcinoid Foundation became the Neuroendocrine Tumor Research Foundation to reaffirm and strengthen its focus on research, beginning a period of tremendous growth marked by $40 million raised and 8 new treatments.

“Over these 20 years, we have created a highly productive global community of neuroendocrine cancer scientists who share resources, collaborate on projects, and train the next generation of researchers,” says Elyse Gellerman, MHS, Chief Executive Officer of the Neuroendocrine Tumor Research Foundation. “We have invested almost $40 million to understand tumor biology, support translational research that is resulting in new treatments, and bring hope to patients and their families around the world.”

“My connection to NETRF was first as a patient, attending education seminars, then a donor, and later by joining the board,” says Todd Gilman, NETRF President, Board of Directors. “This is very personal to me. My time and money that I give and that our family gives to NETRF is that insurance policy. I have two young grandchildren. I want to see them through all their life cycle events.”

Looking ahead to the next 20 years, NETRF recently launched a bold new campaign: Breakthroughs Today, Cures Tomorrow, a commitment to funding $25 million in leading-edge research by 2030 to execute its research roadmap to achieve earlier diagnosis, new treatments and precision medicine.

20 Years of Breakthroughs

2005

Nancy Lindholm, diagnosed with metastatic neuroendocrine cancer at 29 years old, establishes Caring for Carcinoid Foundation – now NETRF – with a mission of funding research to identify new treatments and, ultimately, a cure.

2006

NETRF hosts its first research symposium, bringing together the leading scientists in the field. This symposium has grown to be the premier annual international conference for NET scientists, facilitating collaboration and growth of the neuroendocrine research community.

2010

Dr. Nickolas Papadopoulos discovered mutations in the DAXX and ATRX genes in pancreatic and neuroendocrine tumors. This is the first time these mutations are implicated in any cancer.

2011

The discovery of the ALT pathway in pancreatic neuroendocrine tumors provides a critical prognostic biomarker, helping identify patients at higher risk of relapse. This insight enables more personalized monitoring and treatment strategies to improve patient outcomes and was deployed to the clinic in 2025.

2013

The discovery of CDKN1B as a significantly mutated gene in small-intestinal NETs enhances understanding of tumor development and progression. This finding opens new avenues for targeted therapies and precision medicine.

2014

NETRF awards first grant to the University of Pennsylvania to study the feasibility of CAR T cell therapy as a neuroendocrine cancer treatment.

2017

NETRF awards Dr. Hans Clevers an Accelerator Award to develop organoid models for NETs, creating a “living biobank” to study tumor development and test potential therapies.

2018

Roger Schibli, PhD, developed and tested a new treatment using Terbium-161, capable of more accurately killing individual neuroendocrine cancer cells and eliminating ultra-small cancer lesions that can cause disease recurrence.

2018

NETRF awards Dr. Jennifer Chan a Pilot Award to analyze tumor samples from a Phase II clinical trial of cabozantinib to identify biomarkers predicting response to the drug. The findings were applied in a subsequent Phase III trial, leading to approval of cabozantinib as a NET treatment in 2025.

2019

NETRF funded Dr. Lynette Fernandez Cuesta to study how lung neuroendocrine tumors are classified by combining pathology with molecular data – leading to the discovery of distinct tumor subtypes, including a more aggressive form called supra-carcinoids. This new approach could help guide future treatment.

2019

NETRF funded Dr. Renuka Iyer to launch a Phase I trial of SurVaxM, a caccine targeting surviving, a protein driving NET progression. This approach offers hope for slowing progression and improving outcomes for neuroendocrine cancer.

2019

Dr. Andreas Kjaer of Copenhagen University Hospital validates uPAR as a target for imaging and radiotherapeutics, enabling more precise diagnostics and targeted treatments for NET patients. This leads to a new company, Curasight, to bring this treatment to patients.

2021

NETRF funds a Pilot Award to Dr. Carl Gay, MD Anderson Cancer Center who develops the world’s largest repository of extrapulmonary neuroendocrine carcinoma tumor samples. His work uncovers the presence of “persister cells” that evade treatment.

2021

NETRF funds Dr. J. Bart Rose III to investigate epigenetic differences contributing to racial disparities in pancreatic neuroendocrine tumors. This work will inform more equitable treatment strategies and improve survival for all pancreatic neuroendocrine tumor patients.

2023

NETRF funds Dr. Iacovos Michael to develop preclinical models and liquid biopsies for NETs. His innovative use of duck eggs efficiently creates preclinical models for personalized therapies. Utilizing microRNAs as circulating biomarkers enables early detection and treatment monitoring.

2024

After 10 years of NETRF-funded research, the first CAR T trial for neuroendocrine tumor patients is opened at University of Pennsylvania.

About NETRF

The mission of the Neuroendocrine Tumor Research Foundation (NETRF) is to fund research to discover cures and more effective treatments for neuroendocrine cancers. NETRF is the largest global funder of neuroendocrine cancer research and the preeminent resource for expert patient education and support.

NETRF is a 501(c)(3) organization. All contributions are tax-deductible to the extent allowed by law. Visit www.NETRF.org for more.

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