Rare Cancer Research Foundation
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.
Key facts about Rare Cancer Research Foundation
In short: Rare Cancer Research Foundation gave $6K across 1 grant in 2025 (avg $6K), mostly in Texas. Source: 2025 IRS Form 990.
- EIN
- 46-3405526
- Latest 990 filing
- Form 990, 2025
- Annual giving (2025)
- $5,550
- Grants made (2025)
- 1
- Average grant
- $5,550
- Median grant
- $5,550
- Total assets
- $1,358,604
- Primary geography
- Texas (100% of itemized 2025 grant dollars)
Data from IRS Form 990, 2025; updated September 2026.
Financial Overview
From 2025 IRS Form 990 · View filing
Total Assets
$1.4M
-55.6% YoY
Annual Giving
$6K
-93.2% YoY
Grant Count
1
-50.0% YoY
Avg Grant Size
$6K
-86.4% YoY
About Rare Cancer Research Foundation
Based on IRS filings
Rare Cancer Research Foundation is a nonprofit organization focused on Medical Research, based in Durham, NC. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $1.4M in total assets. In 2025, it awarded 1 grant totaling $6K. Net investment income was $40K.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of all 1 itemized 2025 grant dollars.
States
Cities
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 1 recipients in 2025
Grant Size Distribution
3 grants across all recorded years
Giving History
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| THE UNIVERSITY OF TEXAS MD ANDERSON Houston, TX | RESEARCH | $5,550 |
Financial History
Multi-year comparison from IRS filings
| Metric | 2025 | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $1,358,604 | $3,059,554 | $3,033,890 |
| Revenue | $446,172 | $1,773,373 | $3,503,960 |
| Expenses | $1,742,257 | $2,240,471 | $2,167,619 |
| Net Investment Income | $39,817 | $47,265 | — |
Data update history
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2024 (received by the IRS October 29, 2025)
- Added Form 990 for fiscal year 2025 (received by the IRS June 26, 2026)
Leadership & Key People
Officers and directors from IRS filings
Rare Cancer Research Foundation is led by Virginia Spitzer, CEO on the 2025 filing; 8 of 13 officers listed in 2025 are compensated.
Officers on the 2025 filing
Virginia Spitzer
CEO
New on the 2025 filing
40 hrs/week
$18K (2025)
Barbara Van Hare
President of Pat
Director → President of Pat, 2023
On filings since 2022
40 hrs/week
$80K (2022) → $118K (2025)
Chris Heery MD
Chairman
Director → Chairman, 2024
On filings since 2022
5 hrs/week
No compensation reported
Amber Smith
Director Biobanki
Biobank Mana → Director Biobanki, 2025
On filings since 2023
40 hrs/week
$137K (2023) → $150K (2025)
Robin Kageyama
Director Data Pla
On filings since 2024
40 hrs/week
$162K (2024) → $170K (2025)
Ryan Pripstein
Director
On filings since 2023
1 hr/week
No compensation reported
Keith Laabs
Director
On filings since 2024
1 hr/week
No compensation reported
Jane Wilkinson
Director
New on the 2025 filing
1 hr/week
No compensation reported
Rishi Bagrodia
Director
New on the 2025 filing
1 hr/week
No compensation reported
Marshall Thompson
CTO
President → CTO, 2025
On filings since 2023
40 hrs/week
$189K (2023) → $176K (2025)
Benjamin David Kamphaus
Data Enginee
Technical Fe → Data Enginee, 2025
On filings since 2024
40 hrs/week
$103K (2024) → $134K (2025)
Hana Littleford
Clinical Dat
On filings since 2024
40 hrs/week
$98K (2024) → $120K (2025)
Christine Spencer
Head of Pris
New on the 2025 filing
40 hrs/week
$105K (2025)
Former officers (5)
- Former: Kathryn Kay Coleman (2024) — Prod Enginee
- Former: Susan Horrell (2024) — Director Strategi
- Former: Mark Laabs (2020–2023) — Founder & Chair
- Former: Benjamin Abram (2020–2022) — Director & T
- Former: Jyri Engestrom (2020–2021) — Director
Data from IRS Form 990 filings, 2020–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
Frequently asked questions about Rare Cancer Research Foundation
How much does Rare Cancer Research Foundation give each year?
Rare Cancer Research Foundation gave $6K across 1 grant in 2025, according to its 2025 IRS Form 990. In 2024 it gave $82K across 2 grants.
How large is Rare Cancer Research Foundation?
Rare Cancer Research Foundation reported $1.4M in total assets on its 2025 IRS Form 990. Its revenue that year was $446K.
What is Rare Cancer Research Foundation?
Rare Cancer Research Foundation is a nonprofit organization focused on Medical Research, based in Durham, NC. It holds $1.4M in total assets as of 2025.
Where does Rare Cancer Research Foundation operate?
Rare Cancer Research Foundation has awarded grants in Florida, North Carolina, Texas.
What is Rare Cancer Research Foundation's EIN?
Rare Cancer Research Foundation's EIN (Employer Identification Number) is 46-3405526. IRS Form 990 filing data is available on this page for 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
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