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Bardet Biedl Syndrome Foundation

EIN 46-3343666 · West Chester, PA

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

LegitimacyPassesRegistration and standingFinancial healthStrong100 out of 100GovernanceStrong91 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

THE ORGANIZATION'S MISSION IS TO BUILD A COMMUNITY OF SUPPORT FOR INDIVIDUALS AND FAMILIES, PROVIDE INFORMATION ABOUT BARDET BIEDL SYNDROME, AND PROMOTE SCIENCE AND RESEARCH TO IMPROVE THE LIVES OF INDIVIDUALS WITH BARDET BIEDL SYNDROME.

Income
$396,830
Spending
$167,052
Spent on programs
65%
Reserves
43.7 months of spending
Largest source of income
donations and private grants, 100%
Employees
0
Volunteers
10

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

Financial health

Strong: 100 out of 100. Higher than 84% of charities in its peer group (health care, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover 43.7 months of spending.

  • Debt

    20 of 20

    It owes 0% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 58% of income.

  • Income trend

    15 of 15

    Income rose 182% on the year before.

  • Spending floor

    15 of 15

    65% of spending went to programs and raising each dollar of donations cost 1 cents.

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

Governance

Strong: 91 out of 100. Higher than 72% of charities in its peer group (health care, $250k to $1m).

  • Independent board

    25 of 25

    5 of 5 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.

  • 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 July 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 (2)
  1. $79,365 spent. RESEARCH THE ORGANIZATION PROVIDED RESEARCH GRANTS TO SUPPORT THE CRIBBS REGISTRY. ORGANIZATION LEADERSHIP ATTENDED SCIENTIFIC CONFERENCES TO ADVANCE RESEARCH EFFORTS RELEVANT TO THE COMMUNITY INCLUDING EMBO CILIA IN OCTOBER 2024 AND THE CHAN ZUCKERBERG INITIATIVE RARE AS ONE SUMMIT IN MAY 2025. PRESIDENT TIM OGDEN CO-AUTHORED A PEER REVIEWED PUBLICATION ON EFFECTIVE COLLABORATION BETWEEN PATIENT GROUPS AND RESEARCHERS.
  2. $29,544 spent. COMMUNITY SUPPORT THE ORGANIZATION CONNECTED FAMILIES AND SHARED INFORMATION ON RESEARCH, THERAPIES, AND CARE FOR BARDET BIEDL SYNDROME. THIS INCLUDED HOSTING A CONFERENCE FOR APPROXIMATELY 200 PEOPLE IN JULY 2024, AND A SERIES OF WEBINARS AND LOCAL MEETINGS FOR MEMBERS AND THE GENERAL PUBLIC.

Source: Form 990 for the year ending July 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 July 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 September 2014.

    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.