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Dysautonomia International Inc

EIN 45-5437249 · East Moriches, NY

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

LegitimacyPassesRegistration and standingFinancial healthGood84 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

To increase awareness of Dysautonomia within the medical community and the general public and raise funds for dysautonomia research.

Income
$1.1 million
Spending
$1.2 million
Spent on programs
87%
Reserves
20.8 months of spending
Largest source of income
donations and private grants, 79%
Employees
10
Volunteers
300
Highest pay
$134,885, 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

Good: 84 out of 100. Higher than 55% of charities in its peer group (diseases, $1m to $10m).

  • Reserves

    35 of 35

    Spendable reserves would cover 20.8 months of spending.

  • Debt

    20 of 20

    It owes 5% of what it owns.

  • Living within its means

    4 of 15

    Spending exceeded income by 9% of income.

  • Income trend

    10 of 15

    Income fell 9% on the year before.

  • Spending floor

    15 of 15

    87% of spending went to programs and raising each dollar of donations cost 17 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 61% of charities in its peer group (diseases, $1m to $10m).

  • Independent board

    25 of 25

    6 of 7 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 (5)
  1. $273,241 spent. Conferences to educate patients, caregivers and medicalprofessionals on dysautonomia conditions, treatments and research.
  2. $254,384 spent. Advocacy Initiatives - Patient Support and Empowerment programs.
  3. $214,012 spent. Providing research funding for projects at major University Research Centers.
  4. $188,780 spent. Clinician education.
  5. $121,848 spent. Dysautonomia Awareness promotion, hosting events in cities across the country and lighting monuments and landmarks.

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? Worth knowing.

    Status was revoked on May 15, 2017 for not filing returns for three years, and reinstated on May 15, 2017.

    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 June 2018.

    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.

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.