Washington, D.C. · Nonprofit
EVERYLIFE FOUNDATION FOR RARE DISEASES
EVERYLIFE FOUNDATION FOR RARE DISEASES (Washington, D.C.) receives grants from 24 organizations whose IRS filings report $4,195,583 to it, the largest being MARIN COMMUNITY FOUNDATION ($1,571,506). 14 of them have funded it in more than one year, and 75% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $7.5M
- Funders on record
- 24
- Grants received
- $4.2M
- Net assets
- $4.5M
What Everylife Foundation for Rare Diseases does
Mission
Information regarding the foundation's programs can be obtained at www.everylifefoundation.org.
As stated on its FY2025 Form 990.
Programs
The policy priorities and initiatives of the everylife foundation are identified by the everylife foundation community congress, to ensure that our policy priorities reflect the most pressing needs of the community. A membership-based program dedicated to collaboratively bringing patient organizations, industry leaders, and other rare disease stakeholders together, the community congress acts as a strategic advisory council, providing advice and insight on urgent policy issues impacting the rare disease community.
$2,345,940 spent$2,100,250 earned by the program46% of program spendingRare disease legislative advocates - rare disease legislative advocates rdla is a collaborative program designed to support the advocacy of all rare disease groups. Rdla works to empower the individual to become an advocate by providing informational meetings, legislative resources, advocacy tools, and special events that support organizations and advocates working to promote rare disease legislation. Rdla's goal is to bring the rare disease community together, grow the patient advocacy community and work collectively to ensure that the many voices of patients with rare diseases have an opportunity to be heard in state government and on capitol hill.
$1,835,953 spent36% of program spendingPatient programs and opportunities for patient engagement and community including an artist contest, collaborative workspace, and communications tools.
$917,976 spentof which $550,640 as grants$147,428 earned by the program18% of program spending
The 3 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $5,099,869.
The organization over time
Each line starts at 100 in 2020, so what you read is the shape rather than the size: 150 means half as much again as 2020, 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 $4.5M to $5.8M (+29%).
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.
Government-grant reliance: 2021 4%. Grants only. Government contracts and fees sit inside program revenue.
66% of EVERYLIFE FOUNDATION FOR RARE DISEASES’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. 1 of the last 6 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
Michael Pearlmutter
CEO
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 8 funders to 9 funders, grant income rose $294k → $909k.
9 of 24 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 75% 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 EVERYLIFE FOUNDATION FOR RARE DISEASES’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
EVERYLIFE FOUNDATION FOR RARE DISEASES leans on a few funders — its largest provides 37% of grant income and the top three 71%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
97% 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 EVERYLIFE FOUNDATION FOR RARE DISEASES.
Largest funder’s share by year: 2017 49% · 2018 64% · 2019 53% · 2020 58% · 2021 50% · 2022 55% · 2023 55% — growing more concentrated.
“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
38% of EVERYLIFE FOUNDATION FOR RARE DISEASES's funders are still giving 3 years after their first grant; 58% 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
75% of EVERYLIFE FOUNDATION FOR RARE DISEASES's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $1.1M that is directly attributable, 53% of it comes from Washington, D.C. funders.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $3.1M arriving through sponsors registered in 8 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
EVERYLIFE FOUNDATION FOR RARE DISEASES has grown faster than half of the 5,002 health nonprofits its size.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Organizations like EVERYLIFE FOUNDATION FOR RARE DISEASES
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 Washington, D.C.
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
70% of spending goes to programs.
Governance
Public support
73%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 41 states
Screen this organization
A dated, signed PDF of the compliance screen for EVERYLIFE FOUNDATION FOR RARE DISEASES: 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 EVERYLIFE FOUNDATION FOR RARE DISEASES?
- EVERYLIFE FOUNDATION FOR RARE DISEASES (Washington, D.C.) receives grants from 24 organizations whose IRS filings report $4,195,583 to it, the largest being MARIN COMMUNITY FOUNDATION ($1,571,506). 14 of them have funded it in more than one year, and 75% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does EVERYLIFE FOUNDATION FOR RARE DISEASES have?
- IRS filings report 24 organizations giving $4,195,583 in grants to EVERYLIFE FOUNDATION FOR RARE DISEASES, 14 of which have funded it in more than one year.
- Who is the largest funder of EVERYLIFE FOUNDATION FOR RARE DISEASES?
- MARIN COMMUNITY FOUNDATION is the largest funder on record, with $1,571,506 in grants. The full list of funders is on this page.
- How can an organization like EVERYLIFE FOUNDATION FOR RARE DISEASES find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Washington, D.C.. 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 FY2025 (financials across 2020–2025), and the filings of 24 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 22, 2026. What this page cannot tell you · view filing