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National Fabry Disease Foundation

EIN 20-2944028 · Hillsborough, NC

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

LegitimacyPassesRegistration and standingFinancial healthGood70 out of 100GovernanceStrong91 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

TO ENSURE THAT ALL INDIVIDUALS WITH FABRY DISEASE ARE IDENTIFIED, DIAGNOSED AND PROVIDED AN OPPORTUNITY FOR TREATMENT IN TIME TO AVOID A DIMINISHED QUALITY-OF-LIFE AND LIFE-THREATENING CONSEQUENCES; TO PROVIDE EDUCATION AND AWARENESS TO PEOPLE WITH FABRY DISEASE AND THEIR FAMILIES, TO PHYSICIANS, AND TO THE PUBLIC; TO PROVIDE SUPPORT AND ASSISTANCE TO PEOPLE WITH FABRY DISEASE AND THEIR FAMILIES; AND TO CONDUCT AND PROMOTE RESEARCH TO IMPROVE MANAGEMENT AND TREATMENT FOR FABRY DISEASE.

Income
$592,005
Spending
$738,955
Spent on programs
94%
Reserves
4.3 months of spending
Largest source of income
donations and private grants, 98%
Employees
4
Volunteers
63
Highest pay
$126,174, chair

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

Financial health

Good: 70 out of 100. Higher than 30% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    20 of 35

    Spendable reserves would cover 4.3 months of spending.

  • Debt

    20 of 20

    It owes 1% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 25% of income.

  • Income trend

    15 of 15

    Income rose 3% on the year before.

  • Spending floor

    15 of 15

    94% of spending went to programs and raising each dollar of donations cost 2 cents.

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

Governance

Strong: 91 out of 100. Higher than 73% of charities in its peer group (diseases, $250k to $1m).

  • Independent board

    25 of 25

    5 of 6 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

    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 May 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. $484,454 spent. EDUCATION AND AWARENESS: EARLY INTERVENTION IMPROVES MANY ADVERSE QUALITY-OF-LIFE SYMPTOMS AND EXTENDS PATIENTS' LIFE EXPECTANCY. OUR FAMILY AND PHYSICIAN EDUCATION PROGRAMS HELP TO ENSURE THAT CHILDREN AND ADULTS WITH FABRY DISEASE ARE RECOGNIZED AND DIAGNOSED AT THE EARLIEST POSSIBLE AGE, ALLOWING FOR APPROPRIATE MANAGEMENT AND TREATMENT OF THEIR DISEASE. OUR PUBLIC EDUCATION PROGRAM IS DESIGNED TO REACH INDIVIDUALS WHO ARE UNDIAGNOSED WITH FABRY DISEASE BY RAISING AWARENESS OF THE SYMPTOMS ASSOCIATED WITH THIS CONDITION. WE CONTINUED TO PROVIDE EDUCATION AND AWARENESS ABOUT FABRY DISEASE IN VARIOUS FORMS, SUCH AS OUR ROBUST EDUCATIONAL WEBSITE AT WWW.FABRYDISEASE.ORG; OUR ANNUAL FAMILY EDUCATION CONFERENCE; MONTHLY VIRTUAL FAMILY EDUCATION MEETINGS (OUR 60 EDUCATIONAL VIDEOS LISTED IN A VIDEO INDEX FLYER), VARIOUS MATERIALS SUCH AS AN A FABRY TESTING FLYER, A CHART OF PRIMARY FINANCIAL ASSISTANT PROGRAMS FOR FABRY, A MENTAL HEALTH PROGRAMS RESOURCE FOR FABRY, FLYER WITH TIPS FOR PEOPLE RECEIVING ENZYME REPLACEMENT AND CHAPERONE THERAPIES, AND A HOT DAYS WITH FABRY FLYER, OUR FACEBOOK PAGE OF MORE THAN 4,300 FOLLOWERS, PERIODIC TWEETS ON OUR X PAGE, OUR PERIODIC FABRY FOCUS E-NEWSLETTER, AND DAILY ASSISTANCE VIA EMAIL AND PHONE. WE HAVE EXPANDED OUR SOCIAL MEDIA EDUCATION CAMPAIGN WITH INSTAGRAM, LINKEDIN, AND TIKTOK. WE ARE IN CONTACT WITH OVER 3,000 FABRY FOCUS E-NEWLETTER SUBSCRIBERS. REPORTS FROM OUR PATIENT-REPORTED-OUTCOMES SURVEY PROGRAM PROVIDE INVALUABLE INFORMATION TO INFORM PATIENTS AND PHYSICIANS AND PROVIDE INSIGHTS TO STIMULATE ADDITIONAL RESEARCH. WE INCREASE AWARENESS FOR APRIL FABRY DISEASE AWARENESS MONTH BY PROVIDING DAILY SOCIAL MEDIA AND E-NEWSLETTER EDUCATIONAL UPDATES. PUBLISHED LITERATURE INDICATES 10-20 TIMES AS MANY PEOPLE HAVE FABRY DISEASE AS ARE CURRENTLY DIAGNOSED AND UNDERGOING TREATMENT.
  2. $212,618 spent. COMMUNITY SUPPORT: THE NFDF COMMUNITY SUPPORT PROGRAM AND ASSISTANCE PROGRAM IS PROVIDED TO PEOPLE WITH FABRY DISEASE AND THEIR FAMILIES. THE NFDF HOSTED ITS 13TH ANNUAL FABRY FAMILY CAMP AT VICTORY JUNCTION IN RANDLEMAN, NC. WE PROVIDED DAILY PHONE CALLS, EMAILS, AND WRITTEN CORRESPONDENCE TO SUPPORT INDIVIDUALS WITH FABRY DISEASE AND THEIR FAMILIES. WE PROVIDED PATIENTS AND FAMILIES WITH A FREE 24/7 HOTLINE FOR COUNSELING AND REFERRALS AND MANY INNOVATIVE RESOURCES TO HELP PATIENTS/FAMILIES NAVIGATE DISEASE TESTING, FINANCIAL MANAGEMENT ASSISTANCE, MENTAL HEALTH ASSISTANCE, AND OTHER NEEDS. WE PROVIDED TRANSPORTATION AND OTHER ASSISTANCE TO ATTEND FABRY EDUCATIONAL MEETINGS, PROVIDED FINANCIAL ASSISTANCE FOR ONE-TIME OR SHORT-TERM NEEDS NOT COVERED BY OTHER PROGRAMS, AND CONTINUED TO PROVIDE MY-HEALTH-HANDBOOK-KITS FOR EMERGENCY SITUATIONS. WE FACILITATED TESTING FOR DIAGNOSES AND ACCESS TO TREATMENT. WE CONTINUED TO ADD FABRY SPECIALISTS TO OUR FIND-A-FABRY-SPECIALIST SEARCHABLE DATABASE ON OUR WEBSITE.

Source: Form 990 for the year ending May 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 May 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 November 2006.

    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.