Neuroendocrine Tumor Research Foundation

What Neuroendocrine Tumor Research Foundation does

The Neuroendocrine Tumor Research Foundation (NETRF) is a 501(c)(3) nonprofit foundation headquartered in Quincy, Massachusetts, founded in 2005 by patient Nancy Lindholm (originally as Caring for Carcinoid Foundation, renamed in 2015). The organization directs private donations to breakthrough scientific research on neuroendocrine tumors (NETs) and neuroendocrine carcinomas (NECs), serving three primary audiences: patients and caregivers seeking education and support, scientists and clinicians seeking grant funding, and individual donors, foundations, and corporate supporters funding the mission. NETRF operates with a lean team of approximately 8 staff on a hybrid schedule from a single office south of Boston.

NETRF's core offerings are split between competitive grant programs and patient education services. The grant portfolio includes the Accelerator Award ($800K over four years), Investigator Award ($300K over two years), Pilot Award ($100K per year), and Mentored Research Award ($150K over two years), reviewed through a peer-review process overseen by a Board of Scientific Advisors chaired by senior oncologists from institutions including Emory, Stanford, Memorial Sloan Kettering, MD Anderson, and the University of Pennsylvania. Patient-facing resources include the NET Guide, NETWise podcast, Know Your NETs virtual conference, NET Impact regional conferences, NET Thrivership Series, and a searchable database of NET specialists and support groups. NETRF does not develop proprietary technology products; its digital infrastructure consists of web-based information platforms, donation processing (via Blackbaud), and a vehicle donation program operated through CARS.

The foundation's operating model is diversified donation-driven fundraising rather than commercial revenue. Funding streams include individual one-time and recurring gifts, memorial and tribute contributions, community fundraising events, planned giving and bequests, corporate matching and direct gifts, stock transfers, and vehicle donations. NETRF has awarded over $42.8 million across 171 research projects in 17 countries since 2005, including 20 clinical trials (with a first-in-human CAR T trial in NETs), 8 patents/patent filings in the last five years, 5 industry partnerships and spin-out companies, and 245 research presentations. In 2025, NETRF awarded $3M to fourteen investigators, launched a five-year $25M capital campaign ('Breakthroughs Today, Cures Tomorrow'), and celebrated its 20th anniversary at the annual Margie & Robert E. Petersen Neuroendocrine Cancer Research Symposium. The foundation holds Charity Navigator 4-star and Candid Platinum Seal of Transparency ratings.

Name

Neuroendocrine Tumor Research Foundation

Legal name

Neuroendocrine Tumor Research Foundation

Website

https://netrf.org

Company type

Private

Founded year

2005

Operating status

Operating

Headcount range

1–10 employees

Short description

Neuroendocrine Tumor Research Foundation (NETRF) is a 501(c)(3) nonprofit funding neuroendocrine cancer research through competitive grants and delivering patient education. Founded in 2005, it is the largest global private funder of NET research, with $42.8M awarded across 17 countries.

Ownership category

akta.pro rank

Product category

Cancer Research Foundation

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211)

SIC

Services-Social Services (8300)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

akta.pro secondary industry

Research & Science Grantmaking Foundations (BPAGAKAI)

Keywords

• Cancer research funding
• Nonprofit research foundation
• Scientific research grants
• Patient education programs
• Grant administration services

Headquarters

HQ city

Quincy

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

Operations, Personnel, Marketing or Sales, Technology or R&D

Revenue model

1. Individual Donations: Individual donations from the public, including one-time gifts, monthly recurring gifts, and major gifts. The organization directs these donations to breakthrough scientific research.
2. Memorial and Tribute Gifts: Contributions made in memory of loved ones who have passed from NET cancer, allowing donors to honor special people while supporting innovative research.
3. Community Fundraising: Hosting community fundraiser events such as walks, golf outings, and virtual campaigns organized by volunteers to raise money for NET research.
4. Planned Giving and Bequests: Legacy gifts arranged during lifetime through wills, living trusts, IRAs, and Qualified Charitable Distributions (QCDs) that create lasting impact on neuroendocrine cancer research.
5. Corporate Giving: Corporate donations, matching gifts, and car donations through partnership with CARS (Charitable Adult Rides & Services).
6. Stock and Wire Transfers: Donations of long-term appreciated securities directly to NETRF, providing tax deductions for full fair market value while avoiding capital gains tax.

Go-to-market motion1 record

Distribution channels6 records

Marketing channels9 records

Core offering

The Neuroendocrine Tumor Research Foundation (NETRF) directs individual donations to breakthrough scientific research on neuroendocrine cancer. It administers competitive research grant programs (Accelerator Award up to $800,000, Investigator Award $300,000, Pilot Award $100,000/year, Mentored Research Award $150,000) and delivers patient education resources including the NET Guide booklet, NETWise podcast, virtual and in-person patient conferences, an online Knowledge Center, and a searchable specialist database.

Product overview

The Neuroendocrine Tumor Research Foundation (NETRF) is a nonprofit research foundation, not a product company. Its offerings consist of research grant programs (Accelerator Award, Investigator Award, Pilot Award, and Mentored Research Award ranging from $100,000 to $800,000) that fund neuroendocrine cancer research at institutions worldwide, and patient education resources including the NET Guide, NETWise podcast, Know Your NETs and NET Impact conferences, the NET Thrivership Series, NET Knowledge Center, and a searchable specialist database. NETRF also hosts the annual Margie & Robert E. Petersen Neuroendocrine Cancer Research Symposium to foster scientific collaboration.

Differentiator

Problem solved

Functional benefit

Products and services

• Accelerator Award NETRF's largest and most prestigious research grant providing $800,000 over four years ($200,000 per year) to support substantial research projects in neuroendocrine cancer, available to investigators at institutions worldwide through a competitive peer-review process.
• Investigator Award Research grant providing $300,000 over two years ($150,000 per year) to support established investigators pursuing neuroendocrine cancer research at institutions globally.
• Pilot Award Exploratory research grant providing $100,000 per year to support proof-of-concept projects with potential to advance neuroendocrine cancer research.
• Mentored Research Award Grant providing $150,000 over two years ($75,000 per year) designed to recruit and develop early-career researchers to enter the neuroendocrine cancer field through mentorship.
• NET Guide Free informational guide to neuroendocrine cancer available in print and PDF formats, designed to help newly diagnosed patients and survivors understand their condition, treatment options, and care planning.
• NETWise Podcast Audio education series providing information about neuroendocrine cancer tests, treatments, and disease management through episodic podcast episodes hosted by NETRF.
• Know Your NETs Virtual Patient Education Conference Free online patient and caregiver education conference featuring NET specialists discussing the latest diagnostic tests and treatments for neuroendocrine cancer.
• NET Impact Patient Education Program In-person regional patient and caregiver conferences bringing together patients, caregivers, and providers to discuss neuroendocrine cancer care and emerging research.
• Margie & Robert E. Petersen Neuroendocrine Cancer Research Symposium Annual premier scientific meeting bringing together leading scientists worldwide to share advances in neuroendocrine cancer research, foster collaboration, and disseminate findings from NETRF-funded research.
• NET Knowledge Center Online resource hub providing information about neuroendocrine tumors including diagnostic testing, treatment options, and tools to find specialists.
• Neuroendocrine Tumor Doctor Database Searchable online database of NET specialists and patient support groups across the United States, connecting patients with qualified care providers and community support.

Quantifiable outcome

• $42.8M+ in neuroendocrine cancer research funding awarded since 2005
• +4 more outcomes

Named customers3 records

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Ten partnerships are on record, tiered major, flagship, supporting, minor and core.

• Boehringer IngelheimmajorStrategic or Co-development PartnerGrant from Boehringer Ingelheim supported NETRF's initiative to close longstanding gaps in education and support for individuals living with neuroendocrine carcinoma and their caregivers. The grant funded expanded NEC education content for the NETRF Knowledge Center, NETWise podcast, and revised patient guide.
• ExelixisflagshipStrategic or Co-development PartnerPresenting Sponsor of the 2026 Margie & Robert E. Petersen Neuroendocrine Cancer Research Symposium
• Perspective TherapeuticssupportingStrategic or Co-development PartnerAdditional sponsor providing support for the 2026 Research Symposium
• CamurussupportingStrategic or Co-development PartnerAdditional sponsor providing support for the 2026 Research Symposium
• ITM Isotopen Technologien München (ITM)supportingStrategic or Co-development PartnerAdditional sponsor providing support for the 2026 Research Symposium
• CARS (Charitable Adult Rides & Services)minorChannel Partner/ Reseller/ DistributorPartnership for vehicle donation program. CARS handles the entire donation process including pickup and converts vehicles into funding for NET research. Eligible vehicles include cars, trucks, vans, SUVs, boats, motorcycles, ATVs, RVs, trailers, and airplanes.
• Bioscientifica (Endocrine-Related Cancer Journal)supportingStrategic or Co-development PartnerPublication collaborator. Endocrine-Related Cancer is a peer-reviewed journal publishing basic, translational and clinical investigations focusing on endocrine neoplasias and hormone-dependent cancers. NETRF researchers can access this journal for publication opportunities.
• Bioscientifica (Endocrine Oncology Journal)supportingStrategic or Co-development PartnerPublication collaborator. Endocrine Oncology is an open-access, peer-reviewed journal publishing basic, translational and clinical research on hormones and cancer. NETRF researchers are eligible for a 10% discount on Article Publishing Charges.
• CurasightcoreStrategic or Co-development PartnerSpin-out company formed by Dr. Andreas Kjaer of Copenhagen University Hospital, a NETRF Investigator Award recipient. Curasight focuses on the development of uPAR-PET tracers and therapies for neuroendocrine tumors.
• BlackbaudminorOthersBlackbaud Merchant Services provides secure online credit card donation processing for NETRF. Blackbaud has validated compliance with PCI DSS and PA-DSS standards.

Scale indicators13 records

Recent moves6 records

Expansion highlights6 records

Emerging players

• National Organization for Rare Disorders (NORD): US umbrella organization for rare diseases including NETs; provides research grants and patient advocacy infrastructure that overlaps with NETRF's rare-disease focus.
• Fibrolamellar Cancer Foundation: Patient-founded nonprofit funding research for fibrolamellar carcinoma, a rare liver cancer; operates a similar small-team, donor-driven, grantmaking model for a similarly rare indication.

Direct peers

• Pancreatic Cancer Action Network (PanCAN): Patient-founded nonprofit funding pancreatic cancer research and providing patient services, including a large annual research grants portfolio and patient support programs — directly comparable to NETRF's mission and operations in an adjacent GI cancer.
• Cholangiocarcinoma Foundation: Patient-founded nonprofit funding research and providing education for cholangiocarcinoma, a rare GI cancer. Highly comparable operating model, peer-reviewed grants, and patient community focus.
• International Neuroendocrine Cancer Alliance (INCA): Global umbrella alliance of NET patient advocacy organizations; directly aligned with NETRF's NET-specific mission and serves as a peer convener in the same disease community.
• Stand Up To Cancer: High-profile charitable program funding collaborative translational cancer research via team-based grants — directly comparable to NETRF's grantmaking approach but at a much larger scale.
• Cancer Research Institute: Nonprofit funding immunology and immuno-oncology research, including NET-relevant work such as CAR T-cell therapies that NETRF is pioneering; comparable model of grant-driven cancer research funding.
• V Foundation for Cancer Research: Major cancer research foundation that awards competitive grants across multiple cancer types; comparable grantmaking model, peer-reviewed funding mechanism, and donor-driven fundraising approach.
• Lustgarten Foundation: Largest private funder of pancreatic cancer research, operating a similar model of competitive grantmaking, patient education, and research advocacy for a specific GI cancer. Structurally and operationally analogous to NETRF's focus on neuroendocrine tumors.

Broad incumbents

• American Cancer Society: Largest US cancer nonprofit funding broad research, patient support, and education; competes with NETRF for donor mindshare and overlapping patient services but operates across all cancer types.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks1 record

Key highlights7 records

Customer concentration

• Xx.com/CureNETs
• YouTubeyoutube.com/channel/UCSmb7Hu8YdY5XhWhfcun6bg
• Facebookfacebook.com/NETRF
• LinkedInlinkedin.com/company/netrf
• Instagraminstagram.com/netresearch

Revenue estimate

Valuation estimate

Number of profiles

Profiles10 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

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Frequently asked questions about Neuroendocrine Tumor Research Foundation