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Nbia Disorders Association

EIN 33-0712327 · Cypress, TX

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

LegitimacyPassesRegistration and standingFinancial healthStrong96 out of 100GovernanceGood85 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

In our drive to find a cure for NBIA we provide support to families educate the public and accelerate research with collaborators from around the world.

Income
$526,469
Spending
$431,185
Spent on programs
77%
Reserves
13.2 months of spending
Largest source of income
donations and private grants, 97%
Employees
3
Volunteers
0
Highest pay
$69,999, president

Source: Form 990 for the year ending September 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 96 out of 100. Higher than 80% of charities in its peer group (medical research, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover 13.2 months of spending.

  • Debt

    16 of 20

    It owes 24% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 18% of income.

  • Income trend

    15 of 15

    Income rose 118% on the year before.

  • Spending floor

    15 of 15

    77% of spending went to programs and raising each dollar of donations cost 2 cents.

Source: Form 990 for the year ending September 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Good: 85 out of 100. Higher than 70% of charities in its peer group (medical research, $250k to $1m).

  • Independent board

    25 of 25

    9 of 9 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    0 of 8

    Reports no 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

    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 September 30, 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. $149,307 spent. Research: The Association raises money to fund grants & clinical projects for scientific and medical research to assist in finding a cure for NBIA disorders. This year $181,547 was raised for research and the association awarded a total of $110,635 in research grants. The additional revenue was from interest earned on research funds.
  2. $180,626 spent. Education & Support: This program encompasses many areas of work by the organization. The association publishes a free newsletter three times per year. The newsletter promotes awareness of NBIA educates the public and medical community about these rare disorders supports affected families and disseminates information on NBIA research and treatments. The association responds to general emails from NBIA families from the public and others in addition to all dissemination activities. The association maintains a web presence at www.nbiadisorders.org which provides a database of current accurate information on NBIA. The association also holds virtual webinars on topics of interest throughout the year and has Zoom support group meetings for NBIA families. The association has a networking program a Facebook group & Facebook cause page is on Twitter Instagram and LinkedIn has multiple videos posted on an NBIA YouTube channel and has a volunteer social media director. These all provide a forum for affected individuals their families caregivers and others affected by someone living with NBIA to receive support. Every other year we hold a Family Conference to bring together individuals and families affected by NBIA disorders for four days of learning support and connection. This years conference expenses totaled $120,211.
  3. $1,303 spent. NBIA Alliance: The association is acting as fiscal agent for the NBIA Alliance. The Alliance is an umbrella organization for NBIA patient advocacy nonprofit organizations in ten countries. The Alliance works to further NBIA research and helps to maintain an international patient registry and biobank.

Source: Form 990 for the year ending September 30, 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 September 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 February 1997.

    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.