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Immune Deficiency Foundation

EIN 52-1214782 · Hanover, MD

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 IMMUNE DEFICIENCY FOUNDATION IMPROVES THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE FOR EVERY PERSON AFFECTED BY PRIMARY IMMUNODEFICIENCY. WE FOSTER A COMMUNITY THAT IS CONNECTED, ENGAGED, AND EMPOWERED THROUGH ADVOCACY, EDUCATION, AND RESEARCH.

Income
$11.4 million
Spending
$8.4 million
Spent on programs
70%
Reserves
27.6 months of spending
Largest source of income
donations and private grants, 93%
Employees
46
Volunteers
603
Highest pay
$392,480, president &

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 100 out of 100. Higher than 92% of charities in its peer group (medical research, $10m to $100m).

  • Reserves

    35 of 35

    Spendable reserves would cover 27.6 months of spending.

  • Debt

    20 of 20

    It owes 6% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 27% of income.

  • Income trend

    15 of 15

    Income rose 13% on the year before.

  • Spending floor

    15 of 15

    70% of spending went to programs and raising each dollar of donations cost 9 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100. Higher than 45% of charities in its peer group (medical research, $10m to $100m).

  • Independent board

    25 of 25

    14 of 14 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, 2025, 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. $2.9 million spent. IMMUNE DEFICIENCY FOUNDATION PROVIDED EDUCATIONAL PROGRAMS AND SERVICES FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2025, APPROXIMATELY 34,030 INDIVIDUALS WERE PROVIDED WITH EDUCATION AND SUPPORT THROUGH PUBLICATIONS, WEBINARS, VIDEOS AND PODCAST EPISODES, GET CONNECTED GROUP MEETINGS, AND TEEN AND YOUNG ADULT ACTIVITIES. THERE WERE 2 MILLION WEBSITE VISITORS, OVER 480,000 VIEWS ON YOUTUBE AND 2,600 COMPROMISED DOCUMENTARY SCREENING REQUESTS. SINCE THE LAUNCH, MORE THAN 14,000 PEOPLE HAVE UTILIZED THE IMMUNE SYSTEM SELF-ASSESSMENT TOOL ON OUR WEBSITE.
  2. $1.6 million spent. THE PI COMMUNITY RELIES ON INDIVIDUAL ASSISTANCE INCLUDING BUT NOT LIMITED TO ANSWERING INSURANCE QUESTIONS, LOCATING A SPECIALIST IN THEIR AREA, FINDING TREATMENT INFORMATION, AND LEARNING MORE ABOUT THEIR DIAGNOSIS. OUR PATIENT ADVOCACY SPECIALISTS PROVIDED ANSWERS TO OVER 2,200 QUESTIONS FROM INDIVIDUALS SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. THE ORGANIZATION ALSO WORKS AT THE FEDERAL AND STATE LEVELS TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES SUCH AS VACCINE ACCESS AND INSURANCE COVERAGE CHALLENGES, THAT IMPACT THOSE WHO ARE IMMUNOCOMPROMISED. A STRONG VOLUNTEER GRASSROOTS ADVOCACY NETWORK, INCLUDING HEALTH ACCESS ADVOCATE VOLUNTEERS, INFORM POLICYMAKERS ABOUT ISSUES AFFECTING THOSE WITH PI. IN 2025, THERE WERE MORE THAN 3,650 LETTERS AND MESSAGES SENT TO LEGISLATORS AND EXECUTIVE OFFICIALS TO ENSURE THAT PEOPLE WITH PI CAN LIVE HEALTHY AND PRODUCTIVE LIVES WITH EXCELLENT TREATMENT OPTIONS AND ACCESS TO THE MOST APPROPRIATE HEALTHCARE AVAILABLE. THE PI COMMUNITY RELIES ON INDIVIDUAL ASSISTANCE INCLUDING BUT NOT LIMITED TO ANSWERING INSURANCE QUESTIONS, LOCATING A SPECIALIST IN THEIR AREA, FINDING TREATMENT INFORMATION, AND LEARNING MORE ABOUT THEIR DIAGNOSIS. OUR PATIENT ADVOCACY SPECIALISTS PROVIDED ANSWERS TO OVER 2,200 QUESTIONS FROM INDIVIDUALS SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. THE ORGANIZATION ALSO WORKS AT THE FEDERAL AND STATE LEVELS TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES SUCH AS VACCINE ACCESS AND INSURANCE COVERAGE CHALLENGES, THAT IMPACT THOSE WHO ARE IMMUNOCOMPROMISED. A STRONG VOLUNTEER GRASSROOTS ADVOCACY NETWORK, INCLUDING HEALTH ACCESS ADVOCATE VOLUNTEERS, INFORM POLICYMAKERS ABOUT ISSUES AFFECTING THOSE WITH PI. IN 2025, THERE WERE MORE THAN 3,650 LETTERS AND MESSAGES SENT TO LEGISLATORS AND EXECUTIVE OFFICIALS TO ENSURE THAT PEOPLE WITH PI CAN LIVE HEALTHY AND PRODUCTIVE LIVES WITH EXCELLENT TREATMENT OPTIONS AND ACCESS TO THE MOST APPROPRIATE HEALTHCARE AVAILABLE.
  3. $1.4 million spent. TO IMPROVE THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF THOSE AFFECTED BY PI, THERE ARE SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING ATTENDING FOURTEEN MEDICAL CONFERENCES, PROVIDING INFORMATION, EDUCATION AND RESOURCES TO OVER 14,000 HEALTHCARE PROFESSIONALS, AND ADMINISTERING A CONSULTING IMMUNOLOGIST PROGRAM THAT ALLOWS CLINICIANS TO CONSULT WITH AN EXPERT CLINICAL IMMUNOLOGIST TO OBTAIN VALUABLE DIAGNOSTIC, TREATMENT, AND DISEASE MANAGEMENT INFORMATION. IN 2025 WE LAUNCHED AN ACCREDITED CONTINUING MEDICAL EDUCATION (CME) PROGRAM TO EQUIP HEALTHCARE PROFESSIONALS WITH EDUCATION AND STRATEGIES FOR EARLY PI DETECTION, PERSONALIZED CARE AND OVERCOMING ACCESS BARRIERS. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE RESEARCH GRANT PROGRAM FUNDED FOUR RESEARCH GRANTS FOR PI RELATED RESEARCH IN 2025, TOTALING OVER 200,000. TO IMPROVE THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF THOSE AFFECTED BY PI, THERE ARE SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING ATTENDING FOURTEEN MEDICAL CONFERENCES, PROVIDING INFORMATION, EDUCATION AND RESOURCES TO OVER 14,000 HEALTHCARE PROFESSIONALS, AND ADMINISTERING A CONSULTING IMMUNOLOGIST PROGRAM THAT ALLOWS CLINICIANS TO CONSULT WITH AN EXPERT CLINICAL IMMUNOLOGIST TO OBTAIN VALUABLE DIAGNOSTIC, TREATMENT, AND DISEASE MANAGEMENT INFORMATION. IN 2025 WE LAUNCHED AN ACCREDITED CONTINUING MEDICAL EDUCATION (CME) PROGRAM TO EQUIP HEALTHCARE PROFESSIONALS WITH EDUCATION AND STRATEGIES FOR EARLY PI DETECTION, PERSONALIZED CARE AND OVERCOMING ACCESS BARRIERS. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE RESEARCH GRANT PROGRAM FUNDED FOUR RESEARCH GRANTS FOR PI RELATED RESEARCH IN 2025, TOTALING OVER 200,000.

Source: Form 990 for the year ending December 31, 2025, 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 October 13, 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 November 6, 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 October 13, 2026.

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

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

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

    Recognized by the IRS since April 1986.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 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 November 4, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.