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Foundation for Sarcoidosis Research

EIN 36-4378232 · Chicago, IL

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthStrong100 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

THE FOUNDATION FOR SARCOIDOSIS RESEARCH (FSR) IS THE LEADING INTERNATIONAL ORGANIZATION DEDICATED TO FINDING A CURE FOR SARCOIDOSIS AND IMPROVING CARE FOR SARCOIDOSIS PATIENTS THROUGH RESEARCH, EDUCATION, AND SUPPORT. SINCE ITS ESTABLISHMENT IN 2000, FSR HAS FOSTERED OVER $7.5 MILLION IN SARCOIDOSIS SPECIFIC RESEARCH EFFORTS.

Income
$13.6 million
Spending
$3.4 million
Spent on programs
76%
Reserves
51.7 months of spending
Largest source of income
donations and private grants, 96%
Employees
18
Volunteers
125
Highest pay
$272,376, president & ceo

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 100 out of 100. Higher than 71% of charities in its peer group (philanthropy, $10m to $100m).

  • Reserves

    35 of 35

    Spendable reserves would cover 51.7 months of spending.

  • Debt

    20 of 20

    It owes 7% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 75% of income.

  • Income trend

    15 of 15

    Income rose 428% on the year before.

  • Spending floor

    15 of 15

    76% of spending went to programs and raising each dollar of donations cost 2 cents.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100. Higher than 37% of charities in its peer group (philanthropy, $10m to $100m).

  • Independent board

    25 of 25

    12 of 12 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $971,674 spent. PATIENT AND CLINICIAN SUPPORT AND PROGRAMMING:FSR PROVIDES PATIENTS WITH DIRECT SUPPORT THROUGH OUR PEER-LED TRAINED VOLUNTEER COMMUNITY GROUPS, SUPPORT GROUPS, OUR ONE-ONE-ONE PATIENT NAVIGATOR SUPPORT PROGRAM, AND COMMUNITY OUTREACH ACTIVITIES. FSR PROVIDES DIRECT PATIENT EDUCATION THROUGH FSR'S WEBINAR AND TOWN HALL EDUCATIONAL SERIES, FSR SARC FIGHTER PODCAST. FSR HAS ALSO PROVIDED A SPECIFIC EMPHASIS ON IMPROVING REPRESENTATION IN CLINICAL TRIALS THROUGH OUR IGNORE NO MORE EFFORTS.FSR ALSO PROVIDES CLINICIAN EDUCATION AND SUPPORT THROUGH THE CLINICIAN EDUCATION AND ENGAGEMENT SERIES, PEER CASE REVIEWS, AND THE FSR JOURNAL CLUB. THESE PROGRAMS PROVIDE CLINICIANS WITH CONTINUING MEDICAL EDUCATION CREDITS AND FOSTER BEST PRACTICE SHARING AND OUTCOME IMPROVEMENT STRATEGIES.
  2. $1.4 million spent. FSR PROVIDES RESEARCH FUNDING THROUGH OUR FELLOWSHIP, CARDIAC GRANT, AND PILOT GRANT FUNDING PROGRAM. THROUGH THE FSR CLINICAL STUDIES NETWORK, FSR FUNDS AND FACILITATES A 12 SITE INTERNATIONAL STUDY SEEKING TO UNDERSTAND THE DIAGNOSIS OF CARDIAC SARCOIDOSIS. FSR HAS ALSO SIGNIFICANTLY INCREASED PARTICIPATION IN THE FSR PATIENT REPORTED OUTCOMES REGISTRY IN ORDER TO INCREASE UNDERSTANDING OF PATIENT'S LIVED EXPERIENCE WITH SARCOIDOSIS.
  3. $219,305 spent. FSR WORKS DIRECTLY WITH INDUSTRY PARTNERS LEVERAGING ITS EXPERTISE, CONTACTS, THE FSR PATIENT REPORTED OUTCOMES REGISTRY, AND ITS DATABASE IN SUPPORT OF ACADEMIC AND INDUSTRY SPONSORED RESEARCH EFFORTS. THROUGH THIS PROGRAM FSR HELPS TO REVIEW PROTOCOLS, CONNECT INDUSTRY WITH POSSIBLE INVESTIGATORS AND RESEARCH SITES, AND SUPPORT THE RECRUITMENT AND ENROLLMENT OF SARCOIDOSIS-RELATED INDUSTRY SPONSORED TRIALS.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated September 30, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated September 10, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2024.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since February 2012.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 7, 2026.

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