Neuroendocrine Tumor Research Foundation
Programs and results
What we aim to solve
We work to address the lack of funding research on carcinoid, pancreatic, and related neuroendocrine cancers, as well as the lack of educational resources.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Research Grant Program
NETRF is the largest private funder of NET research, with the goal of curing these diseases. Since its inception in 2005, NETRF has awarded over $36 million in large-scale, multi-year research grants to leading scientists at renowned research institutions. NETRF has established itself as the leading and most efficient not-for-profit funder of neuroendocrine cancer research.
Patient Education Series
NETRF provides the most credible, current, and compassionate patient educational programs. Our resources include:
NETRF’s tremendously successful Neuroendocrine Cancer Guide for Patients and Families, which has been shared freely with thousands of NET patients worldwide.
NETRF's first-of-its-kind NETWise podcast is dedicated to NET education with patient stories and expert guidance to help guide patients and their families through their NET journey.
NETRF proudly hosts patient education conferences throughout the United States and online, including our annual Know Your NETS virtual patient education forum.
NETRF nurtures meaningful connections by linking patients and their caregivers with NET specialists and support groups.
Disease Awareness
The Neuroendocrine Tumor Research Foundation understands the importance of increasing awareness of neuroendocrine tumors (NETs) and providing support to the members of this community. We raise awareness of NETs through our patient education program, our website, and our social media sites.
Where we work
External reviews
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Total amount of research funded since 2005
This metric is no longer tracked.Totals By Year
Population(s) Served
Chronically ill people
Related Program
Research Grant Program
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Total research funding since the organization's founding in 2005.
Number of neuroendocrine cancer patient guides distributed
This metric is no longer tracked.Totals By Year
Population(s) Served
Chronically ill people
Related Program
Patient Education Series
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Patient guides delivered to patients, caregivers, support groups, oncology clinics, physician offices.
Number of research studies funded
This metric is no longer tracked.Totals By Year
Population(s) Served
Chronically ill people
Related Program
Research Grant Program
Type of Metric
Output - describing our activities and reach
Direction of Success
Holding steady
Context Notes
Number of research studies funded each year - Total since 2005: 87
Number of podcast downloads
This metric is no longer tracked.Totals By Year
Population(s) Served
Chronically ill people
Related Program
Patient Education Series
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Number of downloads of our podcast NETWise
Number of podcast followers on YouTube
This metric is no longer tracked.Totals By Year
Population(s) Served
Chronically ill people
Related Program
Patient Education Series
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Unique monthly NETWise listeners on YouTube
Number of views of educational videos through our NETRF YouTube channel
This metric is no longer tracked.Totals By Year
Population(s) Served
Chronically ill people
Related Program
Patient Education Series
Type of Metric
Output - describing our activities and reach
Direction of Success
Holding steady
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
The mission of the Neuroendocrine Tumor Research Foundation is to fund research to discover cures and more effective treatments for carcinoid, pancreatic, and related neuroendocrine cancers. We also aim to bring awareness to these uncommon cancers as well as provide educational resources for patients and families.
What are the organization's key strategies for making this happen?
The NET Research Foundation is committed to funding the most promising research in order to discover cures and more effective treatments for carcinoid, pancreatic, and related neuroendocrine cancers. To date, we have awarded over $36 million in large-scale, multi-year research grants to over 129 leading scientists at renowned research institutions around the world to fund neuroendocrine cancer research.
A Commitment to Peer Review
All research grants and requests are reviewed by our Board of Scientific Advisors, which is comprised of distinguished medical leaders who share a commitment to discovering cures for neuroendocrine cancer. The Board of Scientific Advisors provides scientific direction by offering independent, expert advice. All of its members are pioneers in medical research, published authors in the top peer-reviewed medical journals, and leaders of collaborative research projects at top-ranked universities and institutes. We also regularly reach out to aligned organizations and seek partnerships in order to gain new perspectives and approaches.
An Urgent Imperative
With solid science and peer review at our core, the NET Research Foundation Board is equally committed to driving the process to identify and fund projects that have the most potential. All Board members have a direct connection to neuroendocrine cancer and are committed to finding cures as fast as possible. Rigorous scientific review and timely processes allow us to quickly identify and fund projects that have the most promise. Although strong safeguards are essential, we recognize that we have to take risks in funding research in order to drive progress.
Collaboration to Accelerate Progress
We have a strong commitment to collaboration, which can be seen when we convene a broad cross-section of NET researchers at our yearly NET Research Workshop. We are dedicated to accelerating progress for better treatments and potential cures through partnerships with aligned organizations and private foundations; we reach out to the full research community annually with grants we offer through the American Association for Cancer Research (AACR). We attract the best minds to the field through requests for proposals, international prizes, and Young Investigator Awards.
A Diversified Portfolio
Our research portfolio has expanded to include an aggressive, diversified portfolio of basic and clinical projects. We pursue multiple pathways for identifying promising research. For example, we are currently funding an ambitious immunotherapy initiative through a NET Research Foundation request for proposals process, offering international prizes for critically needed pancreatic and carcinoid cell lines, and collaborating with the AACR to bring new ideas and researchers to the fight for cures.
What are the organization's capabilities for doing this?
All research grants and requests are reviewed by our Board of Scientific Advisors, which is comprised of distinguished medical leaders who share a commitment to discovering cures for neuroendocrine cancer. The Board of Scientific Advisors provides scientific direction by offering independent, expert advice. All of its members are pioneers in medical research, published authors in the top peer-reviewed medical journals, and leaders of collaborative research projects at top-ranked universities and institutes. We also regularly reach out to aligned organizations and seek partnerships in order to gain new perspectives and approaches.
What have they accomplished so far and what's next?
Our research portfolio has expanded to include an aggressive, diversified portfolio of basic and clinical projects. We pursue multiple pathways for identifying promising research. However, there are still many research areas to be pursued.
On the forefront of immunotherapy: When CAR T therapy was approved for blood cancer, NETRF recruited the pioneer in that research to study whether it could be effective for neuroendocrine cancer. We have funded a team at the University of Pennsylvania to advance the study of CAR T cell therapy for NETs, which is headed for a clinical trial as early as next year. Thanks to multiple NETRF grants since 2014, this team has moved this technology from bench to bedside. As CAR T-cell therapy has done for those living with blood cancer, NETRF hopes it will be a revolutionary step forward in treatment.
Breakthrough discoveries in tumor biology: NETRF funding has unlocked some of the biggest mysteries of NETs, including what causes some tumors to recur and metastasize, while other tumors remain less aggressive. Led by Ramesh Shivdasani, MD, PhD, with the Dana-Farber Cancer Institute, Harvard Medical School, the investigators identified molecular substances called biomarkers that may help predict the recurrence of non-functional pancreatic neuroendocrine tumors (pNETs). The finding moves us closer to identifying patients with a high risk for metastasis at diagnosis and initial treatment, personalizing follow-up and treatment.
Improving personalized medicine: PRRT, Peptide Receptor Radionuclide Therapy, is an effective treatment for many but not all patients with NETs. NETRF has funded research around the world to study new nuclear particles and combination therapies to improve the effectiveness of PRRT for more patients. NETRF awarded Rodney Hicks, MD, of the University of Melbourne with a 2018 Accelerator Award to test whether tumor cells can be “prepped” to be more receptive to PRRT, using medications such as a PARP inhibitor. This work has led to a landmark clinical trial in Australia that could help guide the future of NET treatments.
Landmark findings in tumor genetics: NETRF funded the first large-scale genome sequencing study of pancreatic neuroendocrine tumors, which discovered mutations in two genes (DAXX and ATRX) not previously associated with cancer. The landmark paper by Nickolas Papadopoulos, PhD, of Johns Hopkins University School of Medicine was published in the preeminent journal Science in 2011 and has since had a tremendous influence on NET research and beyond. This remarkable finding has led to more research funded by NETRF to better understand the function and behavior of DAXX and ATRX genes in neuroendocrine tumors. The long-term objective of this exciting line of inquiry is to develop new therapeutic approaches based on a better understanding of DAXX and ATRX alterations in pancreatic neuroendocrine tumors.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Neuroendocrine Tumor Research Foundation
Board of directorsas of 09/13/2023
Todd Gilman
Stephen Kaufer
Stephen Blackwood
Jonathan Soroff
Tony Detre
Joseph Li
Todd Gilman
Josh Mailman
Elyse Gellerman
NETRF
Mark Lewis
Julie Mebane
Laurie Rains
Brendan Foley
Laurie Littlepage
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Not applicable -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable