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
To achieve rapid discovery of a cure, the Neuroendocrine Tumor Research Foundation directs 100% of all individual donations to fund breakthrough scientific research of carcinoid, with the goal of curing these diseases. Since its inception, NETRF has awarded over $30 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
The Neuroendocrine Tumor Research Foundation brings together our extensive community of patients, loved ones, medical professionals, and supporters for a day of education, celebration, and fellowship. We provide an open forum for patients, caregivers, leading researchers, and clinicians in the NET community to discuss how current treatment options and combinations of them can help to maximize each patient’s quality of life.
Disease Awareness
The Neuroendocrine Tumor Research Foundation understands the importance of increasing awareness of carcinoid and related neuroendocrine tumors (NETs) and providing support to the members of this community. In order to do this, we have created educational resources on carcinoid, NETs, and pheochromocytoma to be available both online and as enduring materials.
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 since 2019
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
NETWise listeners on YouTube
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 $30 million in large-scale, multi-year research grants to over 80 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.
The lack of well-validated and widely accepted cell lines derived from intestinal carcinoid and pancreatic neuroendocrine tumors (PNET) is a significant barrier for research and development of new therapies. The Neuroendocrine Tumor Research Foundation therefore wishes to stimulate a concerted effort to create a “collection" of well-characterized cell lines that faithfully replicate tumor characteristics and genetics. The Foundation has partnered with the Rare Cancer Research Foundation (RCRF), a foundation dedicated to curing rare cancers through strategic investments and innovative collaborations, and the American Type Culture Collection (ATCC), the world's largest non-profit cell line repository, to establish a Neuroendocrine Tumor Cell Line collection in their catalog. This challenge requires written documentation, detailed description of each cell line, and sample delivery.
Our 15th anniversary webpage includes a timeline of research accomplishments: https://netrf.org/15th-anniversary/
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
-
How is your organization collecting feedback from the people you serve?
Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Suggestion box/email,
-
How is your organization using feedback from the people you serve?
To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To strengthen relationships with the people we serve,
-
What significant change resulted from feedback?
Due to the pandemic, we sent out a survey for patients that revealed that they would prefer a virtual patient education conference for safety, health, and travel restriction reasons, and then we produced our first patient education conference in October of 2020. We also did the same kind of survey for researchers, received the same response that virtual would be preferred for our annual research symposium, and adjusted accordingly.
-
With whom is the organization sharing feedback?
Our staff, Our board, Our community partners,
-
Which of the following feedback practices does your organization routinely carry out?
-
What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback,
Financials
Unlock nonprofit financial insights that will help you make more informed decisions. Try our 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.
Operations
The people, governance practices, and partners that make the organization tick.
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.
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 02/22/2022
Dr. Joe Li
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
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
-
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
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
No data
Race & ethnicity
No data
Gender identity
No data
No data
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 02/03/2021GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.