Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Aug 2008.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
75 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
15 people listed on the 990; $1.1M paid to officers and key staff.
Mark B Delvaux’s $453K as President and CEO is at the 99th percentile of top reported officer pay among 1690 $1–10M philanthropy & grantmaking 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 |
|---|---|---|---|---|---|
| Mark B Delvaux | $452,940 | — | $377,459 | $349,593 | $327,776 |
| Mark Delvaux | — | $377,246 | — | — | — |
| Robert a Sandhaus | $254,781 | $252,872 | $253,911 | $251,740 | $243,025 |
| Patrick M Lunn | $206,739 | $206,469 | $205,961 | $178,822 | $148,082 |
| Christine Yllanes | $148,340 | $133,555 | — | — | — |
| Doreen Flook | — | $130,200 | — | — | — |
| Christine L Yllanes | — | — | $118,200 | $112,491 | $105,899 |
| Victoria E Vaccaro | — | — | $110,397 | $106,334 | $105,162 |
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 15aNo
Programs and updates
Supports educational and scientific programs offering disease and health management services.
Questions for Disease Management Network INC
Your first name shows with your question. Disease Management Network INC answers here, for everyone.
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Disease Management Network Services
Disease management network is an innovative not-for-profit health management company dedicated to improving the lives of persons with ALPHA-1 antitrypsin deficiency ("ALPHA-1") and other rare diseases. Disease management network employs 26 individuals with ALPHA-1 to provide health management services to over 7,000 other ALPHA-1 patients.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2025 990, line by line.
Download 990
| Line | Start FY25 | End FY25 |
|---|---|---|
| Cash and savingsLn 1–2 | $421K | $748K |
| InvestmentsLn 11–13 | $2.1M | $1.9M |
| Land, buildings, equipmentLn 10c | $0 | |
| Total assetsLn 16 | $2.7M | $3.1M |
| LiabilitiesLn 26 | $323K | $374K |
| Net assetsLn 32 | $2.4M | $2.7M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Pay of current officers, directors and key staffLn 5 | $492K | $380K | $112K | |
| Other salaries and wagesLn 7 | $2.5M | $1.9M | $554K | $0 |
| Pension plan contributionsLn 8 | $69K | $58K | $11K | $0 |
| Other employee benefitsLn 9 | $689K | $515K | $173K | $0 |
| Payroll taxesLn 10 | $213K | $165K | $48K | $0 |
| Management feesLn 11a | $2K | $0 | $2K | $0 |
| Professional fundraising feesLn 11e | $0 | $0 | ||
| Investment management feesLn 11f | $6K | $0 | $6K | $0 |
| Other fees for servicesLn 11g | $13K | $0 | $13K | $0 |
| Office expensesLn 13 | $5K | $3K | $3K | $0 |
| Information technologyLn 14 | $8K | $0 | $8K | $0 |
| InsuranceLn 23 | $9K | $0 | $9K | $0 |
| Other expenses (24a–d)Ln 24 | $76K | $0 | $76K | $0 |
| All other expensesLn 24e | $0 | $0 | $0 | $0 |
| Total functional expensesLn 25 | $4.1M | $3.1M | $1.0M | $0 |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest Viewing | $4.3M | $4.1M | $255K | $2.7M | 990 PDF |
| FY2024 | $4.5M | $4.0M | $505K | $2.4M | 990 PDF |
| FY2023 | $4.5M | $4.1M | $311K | $1.8M | 990 PDF |
| FY2022 | $4.2M | $3.9M | $358K | $1.4M | 990 PDF |
| FY2021 | $4.2M | $3.6M | $562K | $1.1M | 990 PDF |
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Schedules filed Part IV
See the full FY2025 990 (6 parts)
Part I · Summary $4,335,242 revenue, 12 lines filed
Part VI · Governance 7 of 8 board members independent, 1 to look at
Part VIII · Statement of revenue $4,335,242 across 5 lines filed
Part IX · Statement of functional expenses $4,080,302 across 14 lines filed
Part X · Balance sheet $3,056,650 assets, 14 lines filed
Part XI · Reconciliation of net assets $2,682,412 net assets at year end
Form 990 e-file (XML) FY2025 from the IRS · Classification, formation year and address from the IRS Business Master File
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