Civic Intelligence

National Fabry Disease Foundation

EIN 20-2944028 • 501(c)3 • Hillsborough, NC

Profile

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.

144 E King St 1419Hillsborough, NC 27278

www.fabrydisease.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

47th percentile

0.01x

Higher debt load relative to assets than 47% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2025

Liabilities / Revenue

42nd percentile

0.00x

Higher debt load relative to revenue than 42% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2025

Net Margin

13th percentile

-25%

Higher net margin than 13% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2025

Top Officer Pay

91st percentile

$126,174

Higher top officer pay than 91% of similar nonprofits.

Top officer pay equals 21.3% of source-year revenue.

501(c)3 • $500k-$1M nonprofits • Source year 2025

Asset Growth

9th percentile

-35%

Faster asset growth than 9% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Annualized from 2024 to 2025

Revenue Growth

44th percentile

2.9%

Faster revenue growth than 44% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Annualized from 2024 to 2025

Balance Sheet
Liabilities / Assets47th percentile

Assets

Down

$269,505

Down $144,342 (-35%) from 2024

Liabilities

Up

$2,608

Up $2,608 from 2024

Net Assets

Down

$266,897

Down $146,950 (-36%) from 2024

Operations
Liabilities / Revenue42nd percentileNet Margin13th percentile

Revenue

Up

$592,005

Up $16,704 (+2.9%) from 2024

Expenses

Up

$738,955

Up $56,445 (+8.3%) from 2024

Net Income

Down

-$146,950

Down $39,741 (-37%) from 2024

Trend Graphs

Balance Sheet Trend

Asset Growth9th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$800K$600K$400K$200K$0Assets 2010: $36,838Liabilities 2010: $0Net Assets 2010: $36,8382010Assets 2011: $40,197Liabilities 2011: $0Net Assets 2011: $40,1972011Assets 2012: $39,120Liabilities 2012: $0Net Assets 2012: $39,1202012Assets 2013: $35,114Liabilities 2013: $0Net Assets 2013: $35,1142013Assets 2014: $142,146Liabilities 2014: $0Net Assets 2014: $142,1462014Assets 2015: $151,453Liabilities 2015: $0Net Assets 2015: $151,4532015Assets 2016: $232,750Liabilities 2016: $0Net Assets 2016: $232,7502016Assets 2017: $133,009Liabilities 2017: $0Net Assets 2017: $133,0092017Assets 2018: $258,930Liabilities 2018: $0Net Assets 2018: $258,9302018Assets 2019: $219,230Liabilities 2019: $0Net Assets 2019: $219,2302019Assets 2020: $370,078Liabilities 2020: $0Net Assets 2020: $370,0782020Assets 2021: $342,157Liabilities 2021: $0Net Assets 2021: $342,1572021Assets 2022: $685,818Liabilities 2022: $0Net Assets 2022: $685,8182022Assets 2023: $521,056Liabilities 2023: $0Net Assets 2023: $521,0562023Assets 2024: $413,847Liabilities 2024: $0Net Assets 2024: $413,8472024Assets 2025: $269,505Liabilities 2025: $2,608Net Assets 2025: $266,8972025

Highlighted filing

2025

Assets$269,505
Liabilities$2,608
Net Assets$266,897
Open 2025 Filing

Operations Trend

Revenue Growth44th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$1.0M$500K$0-$500KRevenue 2010: $164,579Expenses 2010: $145,337Net Income 2010: $19,2422010Revenue 2011: $151,732Expenses 2011: $148,373Net Income 2011: $3,3592011Expenses 2012: $246,6772012Expenses 2013: $315,6432013Revenue 2014: $414,863Expenses 2014: $307,831Net Income 2014: $107,0322014Revenue 2015: $396,935Expenses 2015: $387,628Net Income 2015: $9,3072015Revenue 2016: $470,127Expenses 2016: $388,830Net Income 2016: $81,2972016Revenue 2017: $320,480Expenses 2017: $420,221Net Income 2017: -$99,7412017Revenue 2018: $508,472Expenses 2018: $384,145Net Income 2018: $124,3272018Revenue 2019: $394,250Expenses 2019: $433,950Net Income 2019: -$39,7002019Revenue 2020: $544,803Expenses 2020: $393,955Net Income 2020: $150,8482020Revenue 2021: $188,701Expenses 2021: $216,622Net Income 2021: -$27,9212021Revenue 2022: $572,188Expenses 2022: $228,527Net Income 2022: $343,6612022Revenue 2023: $307,957Expenses 2023: $472,698Net Income 2023: -$164,7412023Revenue 2024: $575,301Expenses 2024: $682,510Net Income 2024: -$107,2092024Revenue 2025: $592,005Expenses 2025: $738,955Net Income 2025: -$146,9502025

Highlighted filing

2025

Revenue$592,005
Expenses$738,955
Net Income-$146,950
Open 2025 Filing

Filings

Most recent year

2025 • Form 990Facts available. Structured filing facts are available, but richer extracted sections are limited.

Open filing
Assets
$269,505
Liabilities
$2,608
Net assets
$266,897
Revenue
$592,005
Expenses
$738,955
Net income
-$146,950
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2025Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.70$0.03$2.67$5.92$7.39$1.47
2024XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$4.14$0.00$4.14$5.75$6.83$1.07
2023XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$5.21$0.00$5.21$3.08$4.73$1.65
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$6.86$0.00$6.86$5.72$2.29$3.44
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$3.42$0.00$3.42$1.89$2.17$0.28
2020Facts available. Structured filing facts are available, but richer extracted sections are limited.$3.70$0.00$3.70$5.45$3.94$1.51
2019Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.19$0.00$2.19$3.94$4.34$0.40
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.59$0.00$2.59$5.08$3.84$1.24
2017Summary only. Only limited summary data is available for this year.$1.33$0.00$1.33$3.20$4.20$1.00
2016Summary only. Only limited summary data is available for this year.$2.33$0.00$2.33$4.70$3.89$0.81
2015Summary only. Only limited summary data is available for this year.$1.51$0.00$1.51$3.97$3.88$0.09
2014XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.42$0.00$1.42$4.15$3.08$1.07
2013Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.35$0.00$0.35$3.16
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.39$0.00$0.39$2.47
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.40$0.00$0.40$1.52$1.48$0.03
2010XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.37$0.00$0.37$1.65$1.45$0.19
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jun 1, 2024 to May 31, 2025
Signed
Oct 13, 2025
Return Version
2024v5.2
Gross Receipts
$592,005
Mission and Program Overview

Mission

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.

To ensure that all individuals with fabry disease are identified, diagnosed and treated in time to avoid a diminished quality-of-life and life- threatening consequences; to provide education and awareness; and to promote research to improve the management and treatment of fabry disease.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$204,046$204,046→ $0
Cash and Non-Interest-Bearing Accounts$205,648$62,799▼ $142,849
Land, Buildings, and Equipment, Net$3,295$1,977▼ $1,318
Intangible Assets$395$391▼ $4
Total Assets$413,847$269,505▼ $144,342
Other Assets Total$463$292▼ $171
Liabilities
Accounts Payable and Accrued Expenses-$2,608-
Total Liabilities$0$2,608▲ $2,608
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$413,847$266,897▼ $146,950
Total Net Assets Fund Balance$413,847$266,897▼ $146,950
Total Liabilities and Net Assets / Fund Balance$413,847$269,505▼ $144,342

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$1,977$8,150$10,127
Compensation and Service Providers
Top Officer Pay91st percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Gerald WalterChairFT$122,499$3,675$126,174
Casey a MckennaSenior Program ManagerFT$101,136$5,000$106,136

Board Members and Trustees

NameTitle
Derek HalbergVice Chair
Elizabeth GaffinDirector
Steven RothmanDirector
Tracy MyattSecretary
Melanie WilsonTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$581,175
Program Service Revenue
$0
Investment Income
$10,830
Other Revenue
$0
All Other Contributions
$581,175
Change in Net Assets
$-146,950
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$325,165
Other Expenses$281,796
Grants and Similar Amounts Paid$131,994
Total Fundraising Expense$8,834
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$153,012$4,832$3,221$161,065
Conferences and Meetings$127,074$2,046-$129,120
Current Officers, Directors, Trustees, and Key Employees$121,133$3,825$2,550$127,508
Grants to Domestic Individuals$121,994--$121,994
Travel$49,958$91-$50,049
Fees for Services Other$48,117$1,216$400$49,733
Payroll Taxes$20,702$654$436$21,792
Other Employee Benefits$14,060$444$296$14,800
Office Expenses$9,257$2,191-$11,448
Grants to Domestic Orgs$10,000--$10,000
Information Technology$2,711$3,296$1,071$7,078
All Other Expenses$3,686$1,361$238$5,285
Fees for Services Accounting-$3,811-$3,811
Other Expenses$2,821$2,600$240$2,821
Insurance-$1,578-$1,578
Depreciation Depletion-$1,323-$1,323
Advertising-$340-$340
Total Functional Expenses$697,072$33,049$8,834$738,955
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Fabry Support and Information GroupConcordia, MO501(c)3To Support Fabry Newborn Screening Initiatives as a Member of the Lysosomal Storage Disease Coalition.$10,000
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 8B

“The organization does not have any committees.”

Form 990, Part VI, Section B, Line 11B

“Prior to filing, form 990 will be reviewed by the chairman and treasurer and then distributed to the full board for review.”

Form 990, Part VI, Section B, Line 12C

“The conflict of interest policy is reviewed and signed by each board member annually.”

Form 990, Part VI, Section B, Line 15A

“The salary level and benefits package of the chairman was independently reviewed and documented by the board of directors, to ensure it does not exceed comparable levels of compensation for non-profit directors with similar experience at comparable organizations. An analysis was performed to ensure the salary for our full-time education and community support staff member is appropriate and in line with peers.”

Form 990, Part VI, Section C, Line 19

“The three most recent form 990s, the bylaws, articles of incorporation, exempt status information, and conflict of interest policy are provided to the public upon request.”

Filing and Contact Details

Filer

Filer Name
National Fabry Disease Foundation
EIN
20-2944028
Phone
9197322799
Address
144 E KING ST 1419, HILLSBOROUGH, NC 27278

Signing Officer

Name
Gerald Walter
Title
Board Chair
Phone
9197322799
Signed
2025-10-13
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Gerald Walter
Formed
2005
Legal Domicile
Va
Voting Board Members
6
Independent Board Members
5
Employees
4
Volunteers
63

Preparer

Firm
Blackman & Sloop Advisors Inc
Address
1414 RALEIGH ROAD SUITE 300, CHAPEL HILL, NC 27517
Preparer
Elizabeth Mauch
Phone
9199428700
Raw XML AppendixShowing 400 of 415 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/ActivitiesConductedPrtshpInd00
IRS990/ActivityOrMissionDesc0TO ENSURE THAT ALL INDIVIDUALS WITH FABRY DISEASE ARE IDENTIFIED, DIAGNOSED AND TREATED IN TIME TO AVOID A DIMINISHED QUALITY-OF-LIFE AND LIFE- THREATENING CONSEQUENCES; TO PROVIDE EDUCATION AND AWARENESS; AND TO PROMOTE RESEARCH TO IMPROVE THE MANAGEMENT AND TREATMENT OF FABRY DISEASE.
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IRS990/Desc0EDUCATION 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.
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IRS990/Form990PartVIISectionAGrp/TitleTxt4DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt5DIRECTOR
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IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt03296
IRS990/InformationTechnologyGrp/ProgramServicesAmt02711
IRS990/InformationTechnologyGrp/TotalAmt07078
IRS990/InsuranceGrp/ManagementAndGeneralAmt01578
IRS990/InsuranceGrp/TotalAmt01578
IRS990/IntangibleAssetsGrp/BOYAmt0395
IRS990/IntangibleAssetsGrp/EOYAmt0391
IRS990/InvestmentIncomeGrp/ExclusionAmt010830
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt010830
IRS990/InvestmentInJointVentureInd00
IRS990/IRPDocumentCnt00
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipAccumDeprecAmt08150
IRS990/LandBldgEquipBasisNetGrp/BOYAmt03295
IRS990/LandBldgEquipBasisNetGrp/EOYAmt01977
IRS990/LandBldgEquipCostOrOtherBssAmt010127
IRS990/LegalDomicileStateCd0VA
IRS990/LoanOutstandingInd00
IRS990/LobbyingActivitiesInd00
IRS990/LocalChaptersInd00
IRS990/MaterialDiversionOrMisuseInd00
IRS990/MembersOrStockholdersInd00
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd00
IRS990/MinutesOfGoverningBodyInd01
IRS990/MissionDesc0TO 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.
IRS990/MoreThan5000KToIndividualsInd00
IRS990/MoreThan5000KToOrgInd00
IRS990/NetAssetsOrFundBalancesBOYAmt0413847
IRS990/NetAssetsOrFundBalancesEOYAmt0266897
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt0413847
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt0266897
IRS990/NondeductibleContributionsInd00
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt02191
IRS990/OfficeExpensesGrp/ProgramServicesAmt09257
IRS990/OfficeExpensesGrp/TotalAmt011448
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherAssetsTotalGrp/BOYAmt0463
IRS990/OtherAssetsTotalGrp/EOYAmt0292
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt0296
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt0444
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt014060
IRS990/OtherEmployeeBenefitsGrp/TotalAmt014800
IRS990/OtherExpensesGrp/Desc0NON OFFICE SUPPLIES
IRS990/OtherExpensesGrp/Desc1EDUCATION
IRS990/OtherExpensesGrp/Desc2BANK FEES
IRS990/OtherExpensesGrp/Desc3MEALS AND ENTERTAINMENT
IRS990/OtherExpensesGrp/FundraisingAmt0382
IRS990/OtherExpensesGrp/FundraisingAmt1240
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt0567
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt12874
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt22600
IRS990/OtherExpensesGrp/ProgramServicesAmt012276
IRS990/OtherExpensesGrp/ProgramServicesAmt1271
IRS990/OtherExpensesGrp/ProgramServicesAmt22821
IRS990/OtherExpensesGrp/TotalAmt013225
IRS990/OtherExpensesGrp/TotalAmt13145
IRS990/OtherExpensesGrp/TotalAmt22840
IRS990/OtherExpensesGrp/TotalAmt32821
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt03221
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt04832
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0153012
IRS990/OtherSalariesAndWagesGrp/TotalAmt0161065
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/FundraisingAmt0436
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt0654
IRS990/PayrollTaxesGrp/ProgramServicesAmt020702
IRS990/PayrollTaxesGrp/TotalAmt021792
IRS990/PoliticalCampaignActyInd00
IRS990/PrincipalOfficerNm0GERALD WALTER
IRS990/ProfessionalFundraisingInd00
IRS990/ProgSrvcAccomActy2Grp/Desc0COMMUNITY 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.
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt0212618
IRS990/ProgSrvcAccomActy2Grp/GrantAmt00
IRS990/ProgSrvcAccomActy2Grp/RevenueAmt00
IRS990/ProhibitedTaxShelterTransInd00
IRS990/PYBenefitsPaidToMembersAmt00
IRS990/PYContributionsGrantsAmt0571255
IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt0139353
IRS990/PYInvestmentIncomeAmt04046
IRS990/PYOtherExpensesAmt0278178
IRS990/PYOtherRevenueAmt00
IRS990/PYProgramServiceRevenueAmt00
IRS990/PYRevenuesLessExpensesAmt0-107209
IRS990/PYSalariesCompEmpBnftPaidAmt0264979
IRS990/PYTotalExpensesAmt0682510
IRS990/PYTotalProfFndrsngExpnsAmt00
IRS990/PYTotalRevenueAmt0575301
IRS990/QuidProQuoContributionsInd00
IRS990/RcvFndsToPayPrsnlBnftCntrctInd00
IRS990/ReconcilationRevenueExpnssAmt0-146950
IRS990/RegularMonitoringEnfrcInd01
IRS990/RelatedEntityInd00
IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd01
IRS990/ReportOtherAssetsInd00
IRS990/ReportOtherLiabilitiesInd00
IRS990/ReportProgramRelatedInvstInd00
IRS990/SavingsAndTempCashInvstGrp/BOYAmt0204046
IRS990/SavingsAndTempCashInvstGrp/EOYAmt0204046
IRS990ScheduleA/FactsAndCircumstancesTestTxt0THE ORGANIZATION'S BOARD IS COMMITTED TO MEETING THE 33 1/3% PUBLIC SUPPORT TEST AND HAS ENACTED SEVERAL PROGRAMS INCLUDING FACEBOOK FUNDRAISING AND AMAZON SMILE TO INCREASE IT'S DONOR BASE. DUE TO THE NATURE OF THIS RARE DISEASE, THE BASE OF SUPPORT IS SOMEWHAT LIMITED TO DONORS WHO ARE KNOWLEDGABLE ABOUT THE DISEASE. OVER 93% OF THE ORGANIZATION'S DONORS ARE FROM THE GENERAL PUBLIC, MAKING CONTRIBUTIONS AVERAGING ABOUT $240 PER CONTRIBUTION. HOWEVER, THE REMAINING DONORS CONTRIBUTE SUCH LARGE DOLLAR AMOUNTS RELATIVE TO THE INDIVIDUAL DONORS THAT IT IS DIFFICULT TO QUALIFY FOR THE 33% SUPPORT TEST. THE ORGANIZATION'S PERCENTAGE IN 2024 WAS 22.73% - A MINOR DECREASE FROM 2023. THE BOARD REMAINS COMMITTED TO INCREASING THE DONOR BASE.
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt0581175
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt0571225
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt0307957
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt0572188
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt0188701
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt02221246
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt010830
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt04046
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt014876
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.22730
IRS990ScheduleA/PublicSupportPY170Pct00.24060
IRS990ScheduleA/PublicSupportTotal170Amt0508233
IRS990ScheduleA/SubstantialContributorsTotAmt01713013
IRS990ScheduleA/TenPctFactsCrcmstncsTestCYInd0X
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt0581175
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt0571225
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt0307957
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt0572188
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt0188701
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt02221246
IRS990ScheduleA/TotalSupportAmt02236122
IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorNum0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine20RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt0RESTRICTED
IRS990/ScheduleBRequiredInd01
IRS990ScheduleD/EquipmentGrp/BookValueAmt01977
IRS990ScheduleD/EquipmentGrp/DepreciationAmt08150
IRS990ScheduleD/EquipmentGrp/OtherCostOrOtherBasisAmt010127
IRS990ScheduleD/TotalBookValueLandBuildingsAmt01977
IRS990ScheduleI/GrantRecordsMaintainedInd00
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/CashGrantAmt0121994
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/GrantTypeTxt0INDIVIDUAL
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/NonCashAssistanceDesc0PROVIDED GRANTS TO INDIVIDUALS WITH FABRY DISEASE THROUGH OUR URGENT AND UNMET NEEDS ASSISTANCE PROGRAM - INCLUDES SHORT-TERM ASSISTANCE FOR HEALTH INSURANCE PREMIUM PAYMENTS, MINOR MEDICAL EXPENSES, OCCASIONAL CAR PAYMENTS AND REPAIRS, TRANSPORTATION, RENT, AND UTILITY BILLS IN EMERGENCIES. IN ADDITION, ASSISTANCE WAS PROVIDED TO INDIVIDUALS WITH FABRY DISEASE AND THEIR FAMILIES TO ATTEND OUR ANNUAL EDUCATIONAL CONFERENCE AND CAMP AND OTHER EDUCATIONAL EVENTS.
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/RecipientCnt056
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/ValuationMethodUsedDesc0PURCHASE PRICE
IRS990ScheduleI/RecipientTable/CashGrantAmt010000
IRS990ScheduleI/RecipientTable/IRCSectionDesc0501(C)3
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt00
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt0TO SUPPORT FABRY NEWBORN SCREENING INITIATIVES AS A MEMBER OF THE LYSOSOMAL STORAGE DISEASE COALITION.
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt0FABRY SUPPORT AND INFORMATION GROUP
IRS990ScheduleI/RecipientTable/RecipientEIN0431890134
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt0108 NE 2ND STREET
IRS990ScheduleI/RecipientTable/USAddress/CityNm0CONCORDIA
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd0MO
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd064020
IRS990ScheduleI/Total501c3OrgCnt01
IRS990/ScheduleJRequiredInd00
IRS990/ScheduleORequiredInd01
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0THE ORGANIZATION DOES NOT HAVE ANY COMMITTEES.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1PRIOR TO FILING, FORM 990 WILL BE REVIEWED BY THE CHAIRMAN AND TREASURER AND THEN DISTRIBUTED TO THE FULL BOARD FOR REVIEW.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2THE CONFLICT OF INTEREST POLICY IS REVIEWED AND SIGNED BY EACH BOARD MEMBER ANNUALLY.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3THE SALARY LEVEL AND BENEFITS PACKAGE OF THE CHAIRMAN WAS INDEPENDENTLY REVIEWED AND DOCUMENTED BY THE BOARD OF DIRECTORS, TO ENSURE IT DOES NOT EXCEED COMPARABLE LEVELS OF COMPENSATION FOR NON-PROFIT DIRECTORS WITH SIMILAR EXPERIENCE AT COMPARABLE ORGANIZATIONS. AN ANALYSIS WAS PERFORMED TO ENSURE THE SALARY FOR OUR FULL-TIME EDUCATION AND COMMUNITY SUPPORT STAFF MEMBER IS APPROPRIATE AND IN LINE WITH PEERS.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4THE THREE MOST RECENT FORM 990S, THE BYLAWS, ARTICLES OF INCORPORATION, EXEMPT STATUS INFORMATION, AND CONFLICT OF INTEREST POLICY ARE PROVIDED TO THE PUBLIC UPON REQUEST.
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0FORM 990, PART VI, SECTION A, LINE 8B
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1FORM 990, PART VI, SECTION B, LINE 11B
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2FORM 990, PART VI, SECTION B, LINE 12C
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3FORM 990, PART VI, SECTION B, LINE 15A
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc4FORM 990, PART VI, SECTION C, LINE 19
IRS990/SchoolOperatingInd00
IRS990/SignificantChangeInd00
IRS990/SignificantNewProgramSrvcInd00
IRS990/SubjectToExcsTaxNetInvstIncInd00
IRS990/SubjectToProxyTaxInd00
IRS990/SubjToTaxRmnrtnExPrchtPymtInd00
IRS990/TaxablePartyNotificationInd00
IRS990/TaxExemptBondsInd00
IRS990/TerminateOperationsInd00
IRS990/TotalAssetsBOYAmt0413847
IRS990/TotalAssetsEOYAmt0269505
IRS990/TotalAssetsGrp/BOYAmt0413847
IRS990/TotalAssetsGrp/EOYAmt0269505
IRS990/TotalCompGreaterThan150KInd00
IRS990/TotalContributionsAmt0581175
IRS990/TotalEmployeeCnt04
IRS990/TotalFunctionalExpensesGrp/FundraisingAmt08834
IRS990/TotalFunctionalExpensesGrp/ManagementAndGeneralAmt033049
IRS990/TotalFunctionalExpensesGrp/ProgramServicesAmt0697072
IRS990/TotalFunctionalExpensesGrp/TotalAmt0738955
IRS990/TotalGrossUBIAmt00
IRS990/TotalLiabilitiesBOYAmt00
IRS990/TotalLiabilitiesEOYAmt02608
IRS990/TotalLiabilitiesGrp/BOYAmt00
IRS990/TotalLiabilitiesGrp/EOYAmt02608
IRS990/TotalNetAssetsFundBalanceGrp/BOYAmt0413847
IRS990/TotalNetAssetsFundBalanceGrp/EOYAmt0266897
IRS990/TotalOtherCompensationAmt08675
IRS990/TotalProgramServiceExpensesAmt0697072
IRS990/TotalReportableCompFromOrgAmt0223635
IRS990/TotalRevenueGrp/ExclusionAmt010830
IRS990/TotalRevenueGrp/RelatedOrExemptFuncIncomeAmt00
IRS990/TotalRevenueGrp/TotalRevenueColumnAmt0592005
IRS990/TotalRevenueGrp/UnrelatedBusinessRevenueAmt00
IRS990/TotalVolunteersCnt063
IRS990/TotLiabNetAssetsFundBalanceGrp/BOYAmt0413847
IRS990/TotLiabNetAssetsFundBalanceGrp/EOYAmt0269505
IRS990/TotReportableCompRltdOrgAmt00
IRS990/TravelGrp/ManagementAndGeneralAmt091
IRS990/TravelGrp/ProgramServicesAmt049958
IRS990/TravelGrp/TotalAmt050049
IRS990/TrnsfrExmptNonChrtblRltdOrgInd00
IRS990/TypeOfOrganizationCorpInd0X
IRS990/UnrelatedBusIncmOverLimitInd00
IRS990/UponRequestInd0X
IRS990/USAddress/AddressLine1Txt0144 E KING ST 1419
IRS990/USAddress/CityNm0HILLSBOROUGH
IRS990/USAddress/StateAbbreviationCd0NC
IRS990/USAddress/ZIPCd027278
IRS990/VotingMembersGoverningBodyCnt06
IRS990/VotingMembersIndependentCnt05
IRS990/WebsiteAddressTxt0HTTP://WWW.FABRYDISEASE.ORG
IRS990/WhistleblowerPolicyInd01
ReturnHeader/BuildTS02025-03-06 01:10:19Z
ReturnHeader/BusinessOfficerGrp/DiscussWithPaidPreparerInd01
ReturnHeader/BusinessOfficerGrp/PersonNm0GERALD WALTER
ReturnHeader/BusinessOfficerGrp/PersonTitleTxt0BOARD CHAIR
ReturnHeader/BusinessOfficerGrp/PhoneNum09197322799
ReturnHeader/BusinessOfficerGrp/SignatureDt02025-10-13
ReturnHeader/Filer/BusinessName/BusinessNameLine1Txt0NATIONAL FABRY DISEASE FOUNDATION
ReturnHeader/Filer/BusinessNameControlTxt0NATI
ReturnHeader/Filer/EIN0202944028
ReturnHeader/Filer/PhoneNum09197322799
ReturnHeader/Filer/USAddress/AddressLine1Txt0144 E KING ST 1419
ReturnHeader/Filer/USAddress/CityNm0HILLSBOROUGH
ReturnHeader/Filer/USAddress/StateAbbreviationCd0NC

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