Neuroendocrine Tumor Research Foundation

aka NETRF   |   Boston, MA   |  www.netrf.org

Mission

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. To achieve rapid discovery of cures, the NET Research Foundation directs its donations to fund breakthrough scientific research of neuroendocrine cancers. Since its inception, the NET Research Foundation has awarded over $30 million in large-scale, multi-year research grants to leading scientists at renowned research institutions. The NET Research Foundation is committed to improving the lives of patients, families, and caregivers affected by neuroendocrine cancer by providing information and educational resources.

Ruling year info

2005

Chief Executive Officer

Elyse Gellerman

Main address

31 St. James Avenue, Suite 365

Boston, MA 02116 USA

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Formerly known as

Caring for Carcinoid Foundation

EIN

20-1945347

NTEE code info

Cancer Research (H30)

Cancer (G30)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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.

Population(s) Served
Adults
Adolescents

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.

Population(s) Served
Adults
Caregivers

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.

Population(s) Served
Adults
Adolescents

Where we work

Our results

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

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.

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.

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

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • 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

Neuroendocrine Tumor Research Foundation
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Operations

The people, governance practices, and partners that make the organization tick.

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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

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 directors
as of 3/1/2021
SOURCE: Self-reported by organization
Board chair

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

SOURCE: Self-reported by organization

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

SOURCE: Self-reported; last updated 2/24/2021,

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 02/03/2021

GuideStar 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

Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.