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 neuroend ... (More)

Neuroendocrine Tumor Research Foundation is a 501(c)(3) organization, with an IRS ruling year of 2005, and donations are tax-deductible.  Cause: Diseases, Disorders, and Disciplines


Contact Information

  https://netrf.org/

 31 St. James Avenue
Suite 365
Boston MA 02116 

  617-946-1780


You are viewing this organization's new Charity Navigator profile page. To view the legacy version, click here.

Star Rating System


Charity Navigator evaluates a nonprofit organization’s financial health including measures of stability, efficiency and sustainability. We also track accountability and transparency policies to ensure the good governance and integrity of the organization.




Exceptional

This charity's score is 98.23, earning it a 4-Star rating. Donors can "Give with Confidence" to this charity. 

This score is calculated from two sub-scores:

This score represents Form 990 data from 2019, the latest year published by the IRS.

View this organization's historical ratings on our legacy website.


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Star Rated Report

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Program Expense

Program Expense Ratio

92.5%


The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s).


This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver. Dividing a charity's average program expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Administrative Expenses

3.2%


As reported by charities on their IRS Form 990, this measure reflects what percent of its total budget a charity spends on overhead, administrative staff and associated costs, and organizational meetings. Dividing a charity's average administrative expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Fundraising Expenses

4.2%


This measure reflects what a charity spends to raise money. Fundraising expenses can include campaign printing, publicity, mailing, and staffing and costs incurred in soliciting donations, memberships, and grants. Dividing a charity's average fundraising expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Liabilities to Assets Ratio

40.4%


The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990).


Part of our goal in rating the financial performance of charities is to help donors assess the financial capacity and sustainability of a charity. As do organizations in other sectors, charities must be mindful of their management of total liabilites in relation to their total assets. This ratio is an indicator of an organization’s solvency and or long term sustainability. Dividing a charity's total liabilities by its total assets yields this percentage.


Source: IRS Form 990

Fundraising Efficiency

$0.06


The amount spent to raise $1 in charitable contributions. To calculate a charity's fundraising efficiency, we divide its average fundraising expenses by the average total contributions it receives. We calculate the charity's average expenses and average contributions over its three most recent fiscal years.


Source: IRS Form 990

Working Capital Ratio

1.28 years


Determines how long a charity could sustain its level of spending using its net available assets, or working capital, as reported on its most recently filed Form 990. We include in a charity's working capital unrestricted and temporarily restricted net assets, and exclude permanently restricted net assets. Dividing these net available assets in the most recent year by a charity's average total expenses, yields the working capital ratio. We calculate the charity's average total expenses over its three most recent fiscal years.


Source: IRS Form 990

Program Expense Growth

46.66%


We compute the average annual growth of program expenses using the following formula: [(Yn/Y0)(1/n)]-1, where Y0 is a charity's program expenses in the first year of the interval analyzed, Yn is the charity's program expenses in the most recent year, and n is the interval of years passed between Y0 and Yn.


Source: IRS Form 990

Governance


Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.


Sources Include: IRS Form 990

Governance:
Independent Voting Board Members
No Material Diversion of Assets
Audited Financials Prepared by Independent Accountant
Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties
Documents Board Meeting Minutes
Distributes 990 to Board Before Filing
Compensates Board

Policies


Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization has these policies in place.


Sources Include: IRS Form 990 and organization's website

Policies:
Conflict of Interest
Whistleblower
Records Retention and Destruction
CEO Compensation Process
Donor Privacy

Transparency


Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization makes this information easily accessible.


Sources Include: IRS Form 990 and organization's website

Transparency:
CEO Salary Listed on 990
Board of Directors Listed on Website
Key Staff Listed on Website
Audited Financial Statements on Website
Form 990 Available on Website

Additional Information

Unscored

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Total Revenue and Expenses

Total Revenue and Expenses

This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.

Salary of Key Persons

Presented here are up to five of this organization's highest compensated employees. This compensation data includes salary, cash bonuses, and expense accounts and is displayed exactly how it is reported to the IRS. The amounts include salary, cash bonuses, and expense accounts. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. Read the IRS policies for compensation reporting



ELYSE GELLERMAN, CHIEF EXECUTIVE OFFICER

$183,023


SUSAN H PAYSON, CHIEF DEVELOPMENT OFFICER

$167,720


JOHN KANKI, DIRECTOR OF RESEARCH

$156,206


MARK LEWIS, DIRECTOR

$0


JONATHAN SOROFF, DIRECTOR

$0


Source: IRS Form 990 (page 7), filing year 2020

Business Master File Data

Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website


Activities:

Activity data not reported from the IRS


Foundation Status:

Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi) (BMF foundation code: 15)


Affiliation:

Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)

Data Sources: IRS Forms 990

The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to view this organization's Forms 990 on the IRS website (if any are available).

Pandemic Response

This organization was impacted by the COVID-19 pandemic in a way that affected their financial health. Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them. Charities may submit their own pandemic responses through their nonprofit portal.


Neuroendocrine Tumor Research Foundation reported being impacted by COVID-19 in the following ways:
  • Program Delivery

  • Fundraising Capacity

  • Revenue


How COVID-19 impacted the organization's operations financially:

Fundraising revenue was impacted due to cancellation of volunteer events.


How COVID-19 impacted the organization's delivery of programs:

We were unable to organize in-person patient conferences and our in-person research symposium, we decreased the amount of patient conferences to one virtual event and the symposium was moved online as well.


How this organization adapted to changing conditions caused by COVID-19:

We went 100% remote for all staff and moved programs online.


Innovations the organization intends to continue permanently after the pandemic:

We will keep a hybrid system for remote work.


...   Impact & Results


This score estimates the actual impact a nonprofit has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.


Impact & Results Score

Not Currently Scored

Neuroendocrine Tumor Research Foundation cannot currently be evaluated by our Encompass Rating Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.

Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.

Learn more about Impact & Results.

Do you work at Neuroendocrine Tumor Research Foundation? Join the waitlist for an updated Impact & Results score.


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Additional Information

Unscored

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Largest Programs

Largest Programs



Neuroendocrine Tumor Research Foundation reported its three largest programs on its FY 2020 Form 990 as:


$3,152,218

Spent in most recent FY

91%

Percent of program expenses


Neuroendocrine Tumor Research Foundation, Inc. (NETRF) funds research into the causes of neuroendocrine tumors in order to find cures for these cancers.


$219,306

Spent in most recent FY

6%

Percent of program expenses


NETRF provides education and information for NET patients and families through a variety of formats. Through its educational conferences, NETRF presents the latest in research and treatment from NET p ... (More)


$88,560

Spent in most recent FY

2%

Percent of program expenses


NETRF conducts outreach to other NET-related organizations in the United States and beyond to convene researchers and facilitate scientific collaboration. Through its work and leadership with these ot ... (More)


...   Leadership & Adaptability


This score provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.


Leadership & Adaptability Score

100

out of 100

The score earned by Neuroendocrine Tumor Research Foundation is a passing score.

Encompass Rating V4 provides an evaluation of the organization's Leadership & Adaptability through the nonprofit organization submitting a survey response directly to Charity Navigator.


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Leadership & Adaptability Report

100

of 100 points

Mission

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s 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.


Source: Nonprofit submitted responses

Vision

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.


NETRF's vision is to fund a cure for Neuroendocrine Cancers.


Source: Nonprofit submitted responses

Strategic Goals

The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.


Goal One: We want to increase awareness of NET cancer as well as the accessibility of patient resources to the NET community.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Goal Two: We need to expand the research community and recruit new scientists to focus on this uncommon cancer.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Goal Three: The podcast program will increase accessibility to information for NET patients and families and mediums like that are increasingly important in a more virtual and remote world.

Goal Type: New program(s) based on observed changes in needs among our constituencies/communities served.


Source: Nonprofit submitted responses

Leadership Development

The nonprofit provides evidence of investment in leadership development


Describe an investment in leadership

We provide professional development resources to attend conferences, webinars, and networking opportunities for all employees to increase their skills. This also allows us to stay in-pace in the research, fundraising, and patient advocacy communities.

Source: Nonprofit submitted responses

Mobilizing for Mission

The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.


This organization mobilizes for mission in the following ways:
  • Strategic Partnerships

  • Thought Leadership

  • Raising Awareness

What are this organization’s external mobilizaton efforts?

We partner with other NET-related organizations to co-fund research and to present patient resources at conferences. We have partnerships and collaborations with organizations abroad to present research findings internationally. We speak at and host patient education events. We post on social media about patient resources, advancements in research, and general information about the disease to raise awareness.

Source: Nonprofit submitted responses

Story of Adaptability

The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.


Our organization went fully remote, moved all employees to work at home and we were still able to meet most of our goals that year. We typically hosted a few patient education conferences and a research symposium that we had to move to virtual platforms. Even with this change we had larger attendances than ever because it was easier for everyone to attend.

Source: Nonprofit submitted responses

...   Culture & Community


This score provides an assessment of the organization's engagement with the constituents it serves, a practice we term Constituent Feedback. When organizations listen to constituents, they are able to better deliver on programs and meet the needs of stakeholders. A future version of this Beacon will also assess an organization's people operations and its Diversity, Equity and Inclusion (DEI) metrics.


Culture & Community Score

100

out of 100

The score earned by Neuroendocrine Tumor Research Foundation is a passing score.

Encompass Rating V4 provides an evaluation of an organization's Culture and Community by measuring its Constituent Feedback practices (see report below). Constituent Feedback data provides 100% of the basis for the initial evaluation of the Culture & Community Beacon.


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Culture & Community Report

100

of 100 points

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Constituent Feedback

Constituent Feedback

Full Credit


Here's how this organization is listening and learning from the people they serve:


How is your organization collecting feedback from the people you serve?

Note: The organization did not respond to this question.


How is your organization using feedback from the people you serve?

Note: The organization did not respond to this question.


With whom does your organization share the feedback you got from the people you serve?

Note: The organization did not respond to this question.


What challenges does your organization face in collecting feedback from the people you serve?

Note: The organization did not respond to this question.


Briefly describe a recent change that your organization made in response to feedback from the people you serve.

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.



Methodology


Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective. We've partnered with GuideStar by Candid to survey organizations about their feedback practices. Nonprofit organizations can fill out the How We Listen section of their Candid profile to receive a rating.


Charity Navigator awards full credit for this Beacon to every nonprofit that is eligible for an Encompass Rating that completes the survey, in recognition of their willingness to publicly share this information with the nonprofit and philanthropic communities. This data is not evaluated for quality at this time. Validation will be added in future iterations of this Beacon.

Analysis and Research


Like the overall Encompass Rating System, the Culture & Community Beacon is designed to evolve as metrics are developed and ready for integration. Our partnership with Feedback Labs and Guidestar by Candid, and other partners including Fund for Shared Insight, GlobalGiving, and Keystone Accountability, enables us to launch the first version of this beacon with Constituent Feedback information collected on Candid's site.


Feedback practices have been shown to support better Diversity, Equity, and Inclusion outcomes, an essential area of assessment that we intend to further expand and develop in the future. Feedback Labs has documented several studies which indicate that beyond achieving organizational goals, nonprofits that are attentive and responsive to concerns and ideas raised by beneficiaries establish stronger relationships with the people they serve, promote greater equity, and empower constituents in ways that can help to ensure better long-term outcomes. You can find resources to help nonprofits improve their feedback practices here.