Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Mar 2020.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Who runs it and what they're paid
7 people listed on the 990-EZ; $128K paid to officers and key staff.
Andrea Downing’s $58K as President is at the 41st percentile of top reported officer pay among 901 $100K–1M diseases & disorders 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 · 6 named individuals · Part VII
| Name | FY2024 | FY2023 | FY2022 | FY2021 |
|---|---|---|---|---|
| Andrea Downing | — | — | $91,545 | $24,480 |
| Andrea Downing | $57,560 | $85,680 | — | — |
| Valencia Robinson | — | — | $77,462 | $8,400 |
| Valencia Robinson | $29,391 | $67,500 | — | — |
| Jill Holdren | $41,350 | $41,000 | — | — |
| Jill Holdren | — | — | $23,574 | $13,500 |
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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Programs and updates
Advocates for patient communities in health technology through education and research.
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Educated patient communities about digital rights and collective governance through town halls one on one meetings trainings, webinars conference presentations social media and other resources.
Advocated for digital rights and collective governance through coalition building; established educated and organized coalitions of patient advocacy organizations around digital rights; jointly conducted research; partnered with other stakeholders to disseminate findings; and advocated for patient rights and agency in health technology.
Developed standards and guides for digital rights and collective community governance of data assets.
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By the numbers
The FY2024 990-EZ, line by line.
Download 990
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest Viewing | $169K | $116K | 990 PDF | ||
| FY2023 | $278K | $248K | $30K | $121K | 990 PDF |
| FY2022 | $265K | $217K | $49K | $90K | 990 PDF |
| FY2021 | $90K | $47K | 990 PDF |
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Schedules filed Part IV
Form 990 e-file (XML) FY2024 from the IRS · Classification, formation year and address from the IRS Business Master File
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