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Fabry Support & Information Group

EIN 43-1890134 · Concordia, MO

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

LegitimacyPassesRegistration and standingFinancial healthStrong90 out of 100GovernanceStrong90 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

SEE SCHEDULE O

Income
$570,712
Spending
$554,160
Spent on programs
71%
Reserves
16 months of spending
Largest source of income
fees for its services, 52%
Employees
9
Volunteers
2
Highest pay
$85,280, founder

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

Strong: 90 out of 100. Higher than 66% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover 16.0 months of spending.

  • Debt

    20 of 20

    It owes 6% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 3% of income.

  • Income trend

    5 of 15

    Income fell 12% on the year before.

  • Spending floor

    15 of 15

    71% of spending went to programs and raising each dollar of donations cost 9 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

Strong: 90 out of 100. Higher than 72% of charities in its peer group (diseases, $250k to $1m).

  • Independent board

    25 of 25

    7 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

    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

    0 of 10

    Did not give 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 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 (9)
  1. $228,364 spent. PATIENT MEETINGS-FSIG brings educational and support meetings directly to Fabry patients and families, many of whom face challenges traveling long distances. These meetings provide up-to-date information from medical and industry professionals and offer opportunities for peer support. In 2025, FSIG hosted meetings in multiple U.S. cities, reaching approximately 200 patients and family members.
  2. $2,867 spent. WEBSITE EDUCATION - FSIG maintains an online platform that connects Fabry patients and caregivers, providing reliable educational resources and opportunities for peer support. In 2025, the website received 20,815 visits and continued to serve as a trusted source of Fabry-related information.
  3. $109,577 spent. EXPERT FABRY CONFERENCE FEFC-FSIG organizes the annual Expert Fabry Conference, offering patients, families, and professionals the opportunity to learn about the latest research and treatment options. In 2025, approximately 113 attendees participated in the conference, which included presentations from leading medical experts.
  4. Program Service Expenses 34,346, Grants and allocations 0, Revenue 40,000 FABRY ASSIST FORMERLY RAFT-FSIG provides financial assistance to individuals and families facing temporary hardships related to Fabry disease. Support may include bridging to longer-term programs, access to educational opportunities, or help with other essential needs. No assistance is provided for treatment drugs.In 2025, FSIG helped Fabry patients 69 times with financial assistance.
  5. Program Service Expenses 16,733, Grants and allocations 0, Revenue 38,000 NEWSLETTERS - FSIG publishes three newsletters every year to keep patients, families, and healthcare professionals informed of recent developments in Fabry research, treatments, and community news. In 2025, approximately 6,131 newsletters were distributed electronically and in print.
  6. Program Service Expenses 489, Grants and allocations 0, Revenue 168 COOLING VEST PROGRAM - Because many Fabry patients cannot sweat and are at risk in hot environments, FSIG provides cooling vests to improve comfort and safety. In 2025, FSIG distributed 9 cooling vests to patients in need.
  7. Program Service Expenses 1,200, Grants and allocations 0, Revenue 12,000 INFORMATION PACKETS-FSIG distributes Fabry information packets to newly diagnosed patients, families, and healthcare professionals to increase understanding and awareness of the disease. In 2025, approximately 55 packets were mailed.
  8. Program Service Expenses 230, Grants and allocations 0, Revenue 0 MEDICAL ALERT CARDS AND WRISTBANDS -To support patients in medical emergencies, FSIG provides Fabry-specific medical alert cards and wristbands, helping ensure recognition of the disease during critical events. In 2025, approximately 250 cards and wristbands were distributed.
  9. Program Service Expenses 0, Grants and allocations 0, Revenue 5,000 NEWBORN SCREENING EDUCATION - FSIG works nationwide to advance newborn screening for Fabry disease by collaborating with states and advocating for its inclusion as a screened condition. As families are identified through these programs, FSIG provides educational meetings that offer essential information, resources, and support to help them navigate a new diagnosis. Through these efforts, FSIG continues to raise awareness and equip families with the knowledge they need from the very beginning of their Fabry journey.

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 October 2000.

    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.