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Project 8p Foundation

EIN 83-2545342 · New York, NY

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

LegitimacyPassesRegistration and standingFinancial healthStrong95 out of 100GovernanceGood88 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

To empower a unified community for chromosome 8p heroes for a meaningful life today while accelerating treatments for tomorrow. Activities include clinical care, research, AI data-driven platform and biorepository, and education and advocacy.

Income
$1.9 million
Spending
$1.4 million
Spent on programs
85%
Reserves
14.8 months of spending
Largest source of income
donations and private grants, 95%
Employees
3
Volunteers
10
Highest pay
$102,083, executive director

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: 95 out of 100. Higher than 79% of charities in its peer group (diseases, $1m to $10m).

  • Reserves

    35 of 35

    Spendable reserves would cover 14.8 months of spending.

  • Debt

    20 of 20

    It owes 3% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 27% of income.

  • Income trend

    10 of 15

    Income fell 6% on the year before.

  • Spending floor

    15 of 15

    85% of spending went to programs and raising each dollar of donations cost 3 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

Good: 88 out of 100. Higher than 40% of charities in its peer group (diseases, $1m to $10m).

  • Independent board

    18 of 25

    4 of 4 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

    0 of 5

    Reports no independent review process for its chief executive's pay.

  • 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. $927,478 spent. Scientific Programs: Project 8p Foundation partners with top researchers and biopharma to uncover the causes of chromosome 8p disorders and improve the lives of those affected. Our work addresses urgent biological questionssuch as symptom progression, mitochondrial dysfunction, gut-brain interactions, and cellular stressto deliver actionable clinical tools for families today, while accelerating discoveries that can lead to scalable treatments for all communities affected by complex neurodevelopmental and neuromuscular conditions. Were advancing innovative technologies and accelerating therapeutic discovery by harnessing data in new ways. Our proprietary 8p Insights Portal is a growing, patient-centered resource that integrates clinical records, caregiver-reported outcomes, and biospecimen datadriving scientific breakthroughs and delivering meaningful impact for those living with chromosome 8p disorders.
  2. $218,505 spent. Community Outreach & Conferences: Project 8p supported over 200 families with clinical tools, education, and services. We hosted a three-day Family & Science Conference, bringing together researchers, clinicians, and families to foster collaboration and accelerate progress. Through monthly roundtables and ongoing stakeholder education, we promote a team science approach while sharing the latest research, clinical insights, and lived experiences. These efforts strengthen our shared goals and ensure the voices of those affected by 8p remain central to every initiative.
  3. $34,196 spent. Patient Impact (Clinics & Care): Project 8p advanced its mission to improve clinical care for individuals with chromosome 8p disorders through several key initiatives. We published the first-ever Clinical Care Guidelines for 8p, providing an evidence-informed framework to guide physicians and care teams worldwide. We also launched the Patient Navigator, a free, interactive, online tool that helps families and clinicians understand symptoms across body systemsdrawing on real-world data from our 8p Insights Portal.Additionally, we expanded our Multidisciplinary Hospital Clinic Model, supporting the development of coordinated care hubs that bring together specialists to provide comprehensive, patient-centered services. These efforts mark important strides in reducing diagnostic delays, improving care coordination, and empowering families with accessible, data-driven resources.

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 July 2019.

    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.