North Carolina · Nonprofit
RARE CANCER RESEARCH FOUNDATION
RARE CANCER RESEARCH FOUNDATION (North Carolina) receives grants from 19 organizations whose IRS filings report $3,948,844 to it, the largest being Silicon Valley Community Foundation ($1,249,600). 8 of them have funded it in more than one year.
- Revenue FY2024
- $1.8M
- Funders on record
- 19
- Grants received
- $3.9M
- Net assets
- $2.3M
What Rare Cancer Research Foundation does
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.
As stated on its FY2024 Form 990.
Programs
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.
$347,544 spentof which $5,550 as grants$116,779 earned by the program26% of program spendingPattern.org a groundbreaking online platform that empowers cancer patients to consent and donate living tissue and clinical data to research regardless of their treatment location in the united states. Once a patient enrolls, the pattern.org team coordinates the collection and shipment of the tissue and data to world class research studies which in turn broadly share any resulting models and learning.
$344,230 spent$114,146 earned by the program25% of program spendingData platform a program initiated in 2023 to develop a unified platform to host combined molecular and clinical rare cancer data obtained internally and externally, which will be shared broadly with the cancer research community.
$404,190 spent30% of program spendingBiobank a program that maintains a high-quality repository of cancer biospecimens (tissue and blood), collected using standardized best practices and linked to clinical and molecular data. The pattern biobank supports both patients and research partners by providing custodial services, managing end-to-end logistics, and accepting donated rare cancer samples, preserving and distributing well-characterized specimens to advance research and accelerate discovery.
$255,234 spent19% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $1,351,198.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2022 to 2023, from $758k to $3.0M (+301%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
67% of RARE CANCER RESEARCH FOUNDATION’s revenue is contributions — more donation-reliant than the typical peer (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 4 of the last 8 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Virginia Spitzer
CEO
Board chair
Chris Heery Md
Chairman
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 1 funder to 5 funders, grant income rose $25k → $1.6M.
8 of 19 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 48% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of RARE CANCER RESEARCH FOUNDATION’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
RARE CANCER RESEARCH FOUNDATION leans on a few funders — its largest provides 32% of grant income and the top three 75%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
56% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund RARE CANCER RESEARCH FOUNDATION.
Largest funder’s share by year: 2017 100% · 2018 100% · 2019 100% · 2020 96% · 2021 96% · 2022 100% · 2023 62% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
29% of RARE CANCER RESEARCH FOUNDATION's funders are still giving 3 years after their first grant; 42% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
RARE CANCER RESEARCH FOUNDATION draws 100% of its grant income from funders outside North Carolina, across 8 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $1.9M arriving through sponsors registered in 7 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
RARE CANCER RESEARCH FOUNDATION holds deeper cash reserves than three-quarters of the 8,121 health nonprofits its size.
this organization peer median middle 50% of peers· 8,121 health nonprofits $1M–$10M, FY2024
Organizations like RARE CANCER RESEARCH FOUNDATION
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In North Carolina
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
74% of spending goes to programs.
Governance
Public support
59%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Screen this organization
A dated, signed PDF of the compliance screen for RARE CANCER RESEARCH FOUNDATION: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds RARE CANCER RESEARCH FOUNDATION?
- RARE CANCER RESEARCH FOUNDATION (North Carolina) receives grants from 19 organizations whose IRS filings report $3,948,844 to it, the largest being Silicon Valley Community Foundation ($1,249,600). 8 of them have funded it in more than one year.
- How many funders does RARE CANCER RESEARCH FOUNDATION have?
- IRS filings report 19 organizations giving $3,948,844 in grants to RARE CANCER RESEARCH FOUNDATION, 8 of which have funded it in more than one year.
- Who is the largest funder of RARE CANCER RESEARCH FOUNDATION?
- Silicon Valley Community Foundation is the largest funder on record, with $1,249,600 in grants. The full list of funders is on this page.
- How can an organization like RARE CANCER RESEARCH FOUNDATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in North Carolina. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2024 (financials across 2017–2024), and the filings of 19 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing