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Haystack Project Inc

EIN 83-3367375 · Severna Park, MD

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

LegitimacyPassesRegistration and standingFinancial healthFair63 out of 100GovernanceGood84 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

HAYSTACK PROJECT BRINGS TOGETHER STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE MEDICAL CONDITIONS TO EDUCATE THEM AND ASSIST THEM WITH THEIR SELF ADVOCACY EFFORTS.

Income
$448,047
Spending
$521,673
Spent on programs
100%
Reserves
7.6 months of spending
Largest source of income
donations and private grants, 100%
Employees
0
Volunteers
9
Highest pay
$36,000, 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: 63 out of 100. Higher than 23% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    28 of 35

    Spendable reserves would cover 7.6 months of spending.

  • Debt

    20 of 20

    It owes 0% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 16% of income.

  • Income trend

    0 of 15

    Income fell 41% on the year before.

  • Spending floor

    15 of 15

    100% of spending went to programs and raising each dollar of donations cost 0 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

Good: 84 out of 100. Higher than 63% of charities in its peer group (diseases, $250k to $1m).

  • Independent board

    25 of 25

    9 of 10 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

    0 of 7

    Reports no 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

    6 of 15

    Its accounts were not audited or reviewed 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 (1)
  1. $519,281 spent. THE ORGANIZATION BRINGS TOGETHER PATIENT ORGANIZATIONS REPRESENTING PATIENTS SUFFERING FROM OR CARING FOR PATIENTS WITH EXTREMELY RARE DISEASES. THIS IS ACCOMPLISHED THROUGH EDUCATING POLICYMAKERS AND STAKEHOLDERS ABOUT THE BARRIERS FDA PROCESSES AND INSURANCE FRAMEWORKS CREATE AND PERPETUATE IN RARE AND ULTRA-RARE DISEASES AND HELP THEM RECOGNIZE THE CIRCUMSTANCES OF EXTREMELY RARE CONDITIONS AND TREATMENTS AND EXPAND INCENTIVES CRITICAL TO ENSURING THEY CAN REACH PATIENTS. POLICY INITIATIVES AND RARE DISEASE PRIORITIES: HAYSTACK PROJECT WORKS WITH PATIENTS TO HELP THEM LEARN HOW TO ADVOCATE FOR THEIR COMMUNITIES AND IMPROVE. MODERNIZATION OF RARE DISEASE CLINICAL TRIALS: WORK FOCUSED ON RETHINKING CLINICAL TRIALS FOR RARE DISEASES. PATIENT EDUCATION & ENGAGEMENT: SPEAKER SERIES WHERE WE BRING VARIOUS EXPERTS TO SPEAK TO ISSUES RELATED TO RARE DISEASES. MEMBER ORGANIZATIONS ARE ABLE TO LISTEN AND ASK QUESTIONS. ALSO CONDUCT MEMBER MEETINGS TO EDUCATE ABOUT CURRENT EVENTS, HAYSTACK INITIATIVES, AND HELP ANSWER QUESTIONS. THE ORGANIZATION BRINGS TOGETHER PATIENT ORGANIZATIONS REPRESENTING PATIENTS SUFFERING FROM OR CARING FOR PATIENTS WITH EXTREMELY RARE DISEASES. THIS IS ACCOMPLISHED THROUGH EDUCATING POLICYMAKERS AND STAKEHOLDERS ABOUT THE BARRIERS FDA PROCESSES AND INSURANCE FRAMEWORKS CREATE AND PERPETUATE IN RARE AND ULTRA-RARE DISEASES AND HELP THEM RECOGNIZE THE CIRCUMSTANCES OF EXTREMELY RARE CONDITIONS AND TREATMENTS AND EXPAND INCENTIVES CRITICAL TO ENSURING THEY CAN REACH PATIENTS. POLICY INITIATIVES AND RARE DISEASE PRIORITIES: HAYSTACK PROJECT WORKS WITH PATIENTS TO HELP THEM LEARN HOW TO ADVOCATE FOR THEIR COMMUNITIES AND IMPROVE. MODERNIZATION OF RARE DISEASE CLINICAL TRIALS: WORK FOCUSED ON RETHINKING CLINICAL TRIALS FOR RARE DISEASES. PATIENT EDUCATION & ENGAGEMENT: SPEAKER SERIES WHERE WE BRING VARIOUS EXPERTS TO SPEAK TO ISSUES RELATED TO RARE DISEASES. MEMBER ORGANIZATIONS ARE ABLE TO LISTEN AND ASK QUESTIONS. ALSO CONDUCT MEMBER MEETINGS TO EDUCATE ABOUT CURRENT EVENTS, HAYSTACK INITIATIVES, AND HELP ANSWER QUESTIONS.

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 October 13, 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 March 2019.

    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 October 21, 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.