Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Apr 1986.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
69 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
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Who runs it and what they're paid
20 people listed on the 990; $966K paid to officers and key staff.
Jorey Berry’s $336K as President & is at the 37th percentile of top reported officer pay among 127 $10–100M medical research nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 8 named individuals · Part VII
| Name | FY2025 | FY2024 | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|---|---|
| Jorey Berry | $335,604 | $291,976 | $268,604 | $215,354 | — | — |
| John G Boyle | — | — | — | — | $135,164 | $209,708 |
| Aimee Simpson | $162,151 | $157,876 | $145,327 | $132,431 | — | — |
| Tammy Black | $157,990 | $151,684 | $142,074 | $134,742 | $133,740 | $122,883 |
| Sarah Rose | $154,436 | $147,965 | $140,396 | $134,904 | $148,002 | $126,441 |
| Lynn Albizo | $148,985 | $142,625 | $127,911 | $121,346 | $121,850 | — |
| Kathryn Stephens | — | — | — | — | $148,075 | — |
| Brian Lloyd | $145,885 | $143,863 | $136,376 | — | — | — |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
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Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2No
- Top official's pay set by an independent reviewPt VI · Ln 15aYes
Programs and updates
Helps people with rare immune system disorders live better lives.
Questions for Immune Deficiency Foundation
Your first name shows with your question. Immune Deficiency Foundation answers here, for everyone.
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Idf provided educational programs for patients and families living with primary immunodeficiencies (pi). In 2022, approximately 7,798 individuals attended more than 335 presentations. These included idf forums and education meetings, idf get connected group meetings, teen and young adult activities, the idf pi conference and scid compass…
The primary immunodeficiency community turns to idf for individual assistance to answer insurance questions, locate a specialist in their area, find information about treatment, and learn more about their diagnosis.
In an effort to improve the diagnosis, treatment, and care of those affected by pi, idf has several initiatives to provide resources directly to the medical community, including exhibiting at 7 medical conferences, providing information and resources to over 590 medical professionals, and administering a consulting immunologist program…
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2022 990, line by line.
Download 990
| Line | FY22 | FY21 | FY20 | FY19 | FY18 |
|---|---|---|---|---|---|
| End of yearLn 1g | $6.2M | $6.2M | $5.5M | $5.0M | $4.1M |
| Given inLn 1b | $1.1M |
| Line | Start FY22 | End FY22 |
|---|---|---|
| Cash and savingsLn 1–2 | $2.5M | $2.8M |
| InvestmentsLn 11–13 | $10.8M | $10.2M |
| Land, buildings, equipmentLn 10c | $71K | $211K |
| Total assetsLn 16 | $14.3M | $14.6M |
| LiabilitiesLn 26 | $445K | $1.5M |
| Net assetsLn 32 | $13.8M | $13.0M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $136K | $136K | ||
| Grants to domestic individualsLn 2 | $23K | $23K | ||
| Pay of current officers, directors and key staffLn 5 | $403K | $170K | $198K | $35K |
| Other salaries and wagesLn 7 | $3.2M | $2.0M | $622K | $557K |
| Pension plan contributionsLn 8 | $96K | $54K | $29K | $13K |
| Other employee benefitsLn 9 | $348K | $214K | $75K | $58K |
| Payroll taxesLn 10 | $276K | $170K | $58K | $48K |
| Legal feesLn 11b | $69K | $46K | $16K | $7K |
| Accounting feesLn 11c | $22K | $15K | $4K | $3K |
| Lobbying feesLn 11d | $331K | $331K | ||
| Investment management feesLn 11f | $65K | $65K | ||
| Other fees for servicesLn 11g | $1.1M | $1.0M | $20K | $24K |
| Advertising and promotionLn 12 | $53K | $52K | $819 | |
| Office expensesLn 13 | $98K | $44K | $3K | $50K |
| Information technologyLn 14 | $266K | $197K | $28K | $40K |
| OccupancyLn 16 | $267K | $175K | $61K | $32K |
| TravelLn 17 | $99K | $70K | $5K | $24K |
| Conferences, conventions and meetingsLn 19 | $386K | $248K | $17K | $120K |
| InterestLn 20 | $2K | $2K | ||
| Depreciation, depletion and amortizationLn 22 | $149K | $101K | $30K | $19K |
| InsuranceLn 23 | $38K | $27K | $6K | $5K |
| Other expenses (24a–d)Ln 24 | $486K | $317K | $61K | $108K |
| All other expensesLn 24e | $80K | $53K | $13K | $14K |
| Total functional expensesLn 25 | $7.9M | $5.5M | $1.3M | $1.2M |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest | $11.4M | $8.4M | $3.0M | $21.9M | 990 PDF |
| FY2024Filed with the IRS Jul 8, 2025 | $10.1M | $9.6M | $519K | $17.4M | 990 PDF |
| FY2023Filed with the IRS Jun 27, 2024 | $9.0M | $7.4M | $1.6M | $15.9M | 990 PDF |
| FY2022 ViewingFiled with the IRS Jun 13, 2023 | $8.9M | $7.9M | $916K | $13.0M | 990 PDF |
| FY2021Filed with the IRS Jun 22, 2022 | $9.9M | $8.0M | $1.9M | $13.8M | 990 PDF |
| FY2020Filed with the IRS Jul 27, 2021 | $6.8M | $6.5M | $250K | $11.4M | 990 PDF |
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Schedules filed Part IV
See the full FY2022 990 (6 parts)
Part I · Summary $8,852,448 revenue, 12 lines filed
Part VI · Governance 13 of 14 board members independent, no flags
Part VIII · Statement of revenue $8,852,448 across 7 lines filed
Part IX · Statement of functional expenses $7,936,471 across 23 lines filed
Part X · Balance sheet $14,567,941 assets, 18 lines filed
Part XI · Reconciliation of net assets $13,042,010 net assets at year end
Form 990 e-file (XML) FY2022 from the IRS · Classification, formation year and address from the IRS Business Master File
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