Rare Cancer Research Foundation

Nonprofit profile at a glance

EIN
463405526
IRS 990 coverage
2014–2025
Forms available
Form 990 2025, Form 990-N 2013
Location
Durham, NC, USA
Phone
8444347272
Rating
76
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Health

Official website

Reported finances

Revenue
$446,172
Expenses
$1,742,257
Assets
$1,358,604
Liabilities
$338,838

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

13 people listed

Executive titles in this filing

  • VIRGINIA SPITZER (CEO)

Highest reported compensation

  • MARSHALL THOMPSON (CTO): $181,710 total reported compensation
  • ROBIN KAGEYAMA (DIR DATA PLA): $175,531 total reported compensation
  • AMBER SMITH (DIR BIOBANKI): $150,013 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The rare cancer research foundation is dedicated to curing rare cancers through strategic investments and collaborations that catalyze effective research and accelerate deployment of promising therapies.

What it reported doing in 2025

Prism (h37) - a program to create exceptional outcomes for individuals facing advanced cancers by pushing the boundaries of science, research, and clinical innovations. The foundation works in deep partnerships with a small group of clients, exploring the detailed molecular and clinical characteristics of the individual clients disease to help them and their clinical team to make more data informed decisions about their treatment journey and contribute that detailed research information to the data platform for future study.

Operating model

Revenue model
Mixed. Its operating money came from several sources; no one source provided a clear majority.
Distribution model
Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Few specific pay-setting methods are documented in the filing; unanswered boxes are not proof of absence and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 82
  • Transparency & Controls: 71
  • Accountability: 81
  • Sustainability: 12
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 77.6%; rating input score 78
  • Fundraising efficiency: $1.31 raised per $1 spent on fundraising; rating input score 7; 7th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 64th percentile among comparable filings
  • Pay-setting controls: 0 of 6 controls in place; rating input score 0
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Missing
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 81st percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 83.3%; rating input score 83; 24th percentile among comparable filings
  • Governance controls: 7 of 9 controls in place; rating input score 78
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Fail
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -290.5%; rating input score 0; 0th percentile among comparable filings
  • Total-asset coverage ratio: 0.78; rating input score 35; 35th percentile among comparable filings
  • Liabilities to assets ratio: 0.25; rating input score 14; 14th percentile among comparable filings
  • Officer compensation ratio: 58.1%; rating input score 2; 2nd percentile among comparable filings

Growth

  • Program expense growth: 17.6% per year; rating input score 100; 80th percentile among comparable filings
  • Revenue growth: 14.3% per year; rating input score 100; 79th percentile among comparable filings
  • Asset growth: 16.4% per year; rating input score 100; 78th percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 77.6% of spending went to programs
  • Governance: 5 of 6 board members independent · 7 of 9 filing controls reported
  • Programs: 4 filed program accomplishments · $1.4M in reported program spending
  • Leadership: top reported pay $182K · 13 people listed · 0 of 6 pay-setting controls reported
  • Consistency: 28 of 28 current checks pass
  • Schedules: 7 filed schedules · includes major donors, grants, and executive pay
  • Filing history: 11 filing years from 2014 to 2025
  • Contacts: How to reach this organization
  • Money network: 9 filed money-flow records
  • Related organizations: 1 filed related-organization link
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Transparency & Controls: Pay-setting controls scored 0/100.
  • High — Financial Efficiency: Fundraising efficiency scored 7/100.
  • High — Sustainability: Operating margin scored 0/100.
  • Review — Accountability: Governance controls: 2 of 9 not reported.
  • Moderate — Sustainability: Total-asset coverage ratio scored 35/100.
  • High — Sustainability: Officer compensation ratio scored 2/100.
  • High — Sustainability: Liabilities to assets ratio scored 14/100.