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Myelodysplastic Syndromes Foundation

EIN 22-3283911 · New York, NY

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

LegitimacyPassesRegistration and standingFinancial healthFair65 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

THE MDS FOUNDATION IS A GLOBAL NONPROFIT DEDICATED TO IMPROVING THE LIVES OF PATIENTS WITH MYELODYSPLASTIC SYNDROMES (MDS) THROUGH PATIENT SUPPORT, EDUCATION, ADVOCACY, RESEARCH, AND COLLABORATION TO ADVANCE BETTER CARE AND OUTCOMES WORLDWIDE.

Income
$1.9 million
Spending
$3.0 million
Spent on programs
68%
Reserves
4.8 months of spending
Largest source of income
donations and private grants, 98%
Employees
12
Volunteers
24
Highest pay
$228,441, ceo

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

Fair: 65 out of 100. Higher than 25% of charities in its peer group (diseases, $1m to $10m).

  • Reserves

    20 of 35

    Spendable reserves would cover 4.8 months of spending.

  • Debt

    20 of 20

    It owes 8% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 63% of income.

  • Income trend

    10 of 15

    Income fell 7% on the year before.

  • Spending floor

    15 of 15

    68% of spending went to programs and raising each dollar of donations cost 29 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 61% of charities in its peer group (diseases, $1m to $10m).

  • Independent board

    25 of 25

    7 of 8 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. $1.5 million spent. THE MDS FOUNDATION ADVOCATES ON BEHALF OF INDIVIDUALS AFFECTED BY MYELODYSPLASTIC SYNDROMES (MDS), A RARE AND COMPLEX BLOOD CANCER. THROUGH EDUCATION, AWARENESS, AND PATIENT ENGAGEMENT, WE EMPOWER PATIENTS AND CAREGIVERS TO MAKE INFORMED HEALTHCARE DECISIONS AND ACCESS APPROPRIATE CARE.WE WORK WITH HEALTHCARE PROFESSIONALS, RESEARCHERS, AND INDUSTRY STAKEHOLDERS TO ENSURE THE PATIENT VOICE IS REPRESENTED IN TREATMENT DEVELOPMENT, POLICY DISCUSSIONS, AND CLINICAL GUIDELINES. WE PROVIDE MULTILINGUAL EDUCATIONAL MATERIALS, PATIENT NAVIGATION SERVICES, PUBLIC AWARENESS CAMPAIGNS, AND REFERRALS TO MDS CENTERS OF EXCELLENCE AROUND THE WORLD.
  2. $269,674 spent. EDUCATIONAL SYMPOSIA AND A BI-ANNUAL CONFERENCE ARE CONDUCTED IN PARTNERSHIP WITH SEVERAL SOCIETIES AND ASSOCIATIONS, INCLUDING THE AMERICAN SOCIETY OF HEMATOLOGY AND THE ONCOLOGY NURSING SOCIETY. IN ADDITION, THE FOUNDATION HOSTS ITS OWN PROFESSIONAL EDUCATIONAL PROGRAMS DESIGNED TO ADVANCE THE UNDERSTANDING OF MYELODYSPLASTIC SYNDROMES (MDS), IMPROVE THE QUALITY OF PATIENT CARE, AND SUPPORT THE CONTINUING EDUCATION OF HEALTHCARE PROFESSIONALS. THESE INFORMATIVE AND INTERACTIVE PROGRAMS ARE AIMED AT HEMATOLOGISTS, ONCOLOGY NURSES, HEMATOLOGY FELLOWS, PHARMACISTS WORKING WITH MDS PATIENTS, AND OTHER ALLIED HEALTH PROFESSIONALS INVOLVED IN THE CARE AND TREATMENT OF INDIVIDUALS WITH MDS.
  3. $316,650 spent. THE MDS FOUNDATION SUPPORTS AND ADVANCES SCIENTIFIC RESEARCH IN MYELODYSPLASTIC SYNDROMES (MDS) THROUGH ITS YOUNG INVESTIGATOR RESEARCH PROGRAM. THE FOUNDATION INVITES EARLY-CAREER INVESTIGATORS TO SUBMIT PROPOSALS FOCUSED ON BASIC SCIENCE OR CLINICAL RESEARCH RELATED TO THE CAUSES, EPIDEMIOLOGY, MOLECULAR BIOLOGY, CYTOGENETICS, MORPHOLOGY, PROGNOSIS, AND MANAGEMENT OF MDS.IN ADDITION TO FUNDING INDIVIDUAL RESEARCH, THE FOUNDATION CONVENES INTERNATIONAL WORKING GROUPS COMPOSED OF LEADING SCIENTISTS AND PHYSICIANS TO COLLABORATIVELY IMPROVE DIAGNOSTIC STANDARDS, PROGNOSTIC TOOLS, AND TREATMENT STRATEGIES.

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 2000.

    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.