UNDIAGNOSED DISEASES NETWORK FOUNDATION: Form 990, tax year 2024

View the entire original 990 at ProPublica ↗

Organization
UNDIAGNOSED DISEASES NETWORK FOUNDATION (EIN 87-3474254)
Tax period
2024-01-01 to 2024-12-31
Filed
2025-10-21
IRS object ID
202512959349301431
Schema version
2024v5.0
Source
Download XML · Original 990 at ProPublica

Every field in the e-filed return. Faint text is the IRS element name, for citing.

Return header ReturnHeader

FieldValueIRS element (for citing)
Return2025-10-21T04:48:51-07:00ReturnTs
Tax Period End2024-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN262176601PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1EASY OFFICE DBA JITASABusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line11120 S RACKHAM WAY SUITE 300AddressLine1Txt
CityMERIDIANCityNm
State AbbreviationIDStateAbbreviationCd
ZIP83642ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2024-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN873474254EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1UNDIAGNOSED DISEASES NETWORK FOUNDATIONBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlUNDIBusinessNameControlTxt
Phone2025994465PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line11012 14TH STREET NW SUITE 500AddressLine1Txt
CityWASHINGTONCityNm
State AbbreviationDCStateAbbreviationCd
ZIP20005ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonTROY EVANSPersonNm
Person TitleTREASURERPersonTitleTxt
Phone8017922697PhoneNum
Signature2025-10-21SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd
FieldValueIRS element (for citing)
IRS Responsible Prty Info CurrYes (1)IRSResponsiblePrtyInfoCurrInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonJERMEY CORKPreparerPersonNm
PTINP01544850PTIN
Phone2082874777PhoneNum
Preparation2025-10-21PreparationDt
FieldValueIRS element (for citing)
Tax2024TaxYr
Build TS2025-03-06 01:10:19ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerDANIELLE CARNIVALPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line11012 14TH STREET NW SUITE 500AddressLine1Txt
CityWASHINGTONCityNm
State AbbreviationDCStateAbbreviationCd
ZIP20005ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$328,998GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressUDNF.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2021FormationYr
Legal Domicile StateDCLegalDomicileStateCd
Activity Or MissionTHE UDNF'S MISSION IS TO IMPROVE ACCESS TO DIAGNOSIS, RESEARCH, AND CARE FOR ALL WITH UNDIAGNOSED AND ULTRA-RARE CONDITIONS. WE AIM TO FOSTER COLLABORATION BETWEEN PATIENTS, CLINICIANS, AND SCIENTISTS TO ENHANCE THE QUALITY OF LIFE OF UNDIAGNOSED PATIENTS. WE DO THIS BY MITIGATING BARRIERS TO EQUITY AND ACCESS IN HEALTHCARE; SETTING STANDARDS FOR PATIENT MANAGEMENT; AND BRIDGING DIAGNOSIS AND THERAPEUTICS AS WELL AS RESEARCH AND CLINICAL CARE IN UNDIAGNOSED AND ULTRA-RARE DISEASES.ActivityOrMissionDesc
Voting Members Governing Body15VotingMembersGoverningBodyCnt
Voting Members Independent14VotingMembersIndependentCnt
Total Employee0TotalEmployeeCnt
Total Volunteers25TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$2,571,504PYContributionsGrantsAmt
CY Contributions Grants$324,360CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$8,321PYInvestmentIncomeAmt
CY Investment Income$4,638CYInvestmentIncomeAmt
PY Other Revenue$0PYOtherRevenueAmt
CY Other Revenue$0CYOtherRevenueAmt
PY Total Revenue$2,579,825PYTotalRevenueAmt
CY Total Revenue$328,998CYTotalRevenueAmt
PY Grants And Similar Paid$0PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$2,500CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$95,146PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$354,309CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$7,878CYTotalFundraisingExpenseAmt
PY Other Expenses$123,191PYOtherExpensesAmt
CY Other Expenses$1,071,097CYOtherExpensesAmt
PY Total Expenses$218,337PYTotalExpensesAmt
CY Total Expenses$1,427,906CYTotalExpensesAmt
PY Revenues Less Expenses$2,361,488PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$1,098,908CYRevenuesLessExpensesAmt
Total Assets BOY$2,406,337TotalAssetsBOYAmt
Total Assets EOY$1,444,511TotalAssetsEOYAmt
Total Liabilities BOY$35,236TotalLiabilitiesBOYAmt
Total Liabilities EOY$47,368TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$2,371,101NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$1,397,143NetAssetsOrFundBalancesEOYAmt
MissionTHE UDNF'S MISSION IS TO IMPROVE ACCESS TO DIAGNOSIS, RESEARCH, AND CARE FOR ALL WITH UNDIAGNOSED AND ULTRA-RARE CONDITIONS. WE AIM TO FOSTER COLLABORATION BETWEEN PATIENTS, CLINICIANS, AND SCIENTISTS TO ENHANCE THE QUALITY OF LIFE OF UNDIAGNOSED PATIENTS. WE DO THIS BY MITIGATING BARRIERS TO EQUITY AND ACCESS IN HEALTHCARE; SETTING STANDARDS FOR PATIENT MANAGEMENT; AND BRIDGING DIAGNOSIS AND THERAPEUTICS AS WELL AS RESEARCH AND CLINICAL CARE IN UNDIAGNOSED AND ULTRA-RARE DISEASES.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$941,747ExpenseAmt
Grant$2,500GrantAmt
Revenue$0RevenueAmt
DescPATIENT NAVIGATION PROGRAM - THE PATIENT NAVIGATION PROGRAM SUPPORTS PATIENTS AND FAMILIES WITH UNDIAGNOSED AND ULTRA-RARE DISEASE CONDITIONS. ONCE ENROLLED, PATIENTS AND FAMILIES ARE ASSIGNED A PATIENT NAVIGATOR THAT WILL WORK WITH THEM ONE-ON-ONE TO ADDRESS THEIR NEEDS AND HELP THEM NAVIGATE THE DIAGNOSTIC AND THERAPEUTIC ODYESSEYS.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$438,676ExpenseAmt
Grant$0GrantAmt
Revenue$0RevenueAmt
DescGENERAL PROGRAMS - CONTINUING, STRENGTHENING, AND EXPANDING THE UNDIAGNOSED DISEASES NETWORK, A RESEARCH INSTITUTE BACKED BY THE NATIONAL INSTITUTE OF HEALTH THAT SEEKS TO PROVIDE ANSWERS FOR PATIENTS AND FAMILIES AFFECTED BY UNDIAGNOSED DISEASES.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$16,000ExpenseAmt
Grant$0GrantAmt
Revenue$0RevenueAmt
DescOUTREACH AND EDUCATION - UNDIAGNOSED AND ULTRA-RARE PATIENTS CAN CALL THE UDNF TO ACCESS INFORMATION ABOUT RESEARCH OPPORTUNITIES, DIAGNOSTIC RESOURCES, THERAPEUTIC MATCHING, TECHNOLOGICAL DEVELOPMENTS, SOCIAL SERVICES, AND ADVOCACY RESOURCES. WE NETWORK WITH PATIENT ADVOCACY ORGANIZATIONS, COMMUNITY HEALTH PROVIDERS, RESEARCHERS, SOCIAL SERVICE PROVIDERS, AND FUNDERS.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

FieldValueIRS element (for citing)
Expense$3,338ExpenseAmt
Grant$0GrantAmt
Revenue$0RevenueAmt
DescOTHER PROGRAMS - COLUMBUS FOUNDATION GRANTDesc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$3,338TotalOtherProgSrvcExpenseAmt
Total Other Prog Srvc Grant$0TotalOtherProgSrvcGrantAmt
Total Other Prog Srvc Revenue$0TotalOtherProgSrvcRevenueAmt
Total Program Service Expenses$1,399,761TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying ActivitiesYes (1)LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Donor Rstr Or Quasi Endowments0DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other Liabilities0ReportOtherLiabilitiesInd
Include FIN48 Footnote0IncludeFIN48FootnoteInd
Independent Audit Fincl Stmt0IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign Activities0ForeignActivitiesInd
More Than5000 K To Org0MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising Activities0FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To Organizations0GrantsToOrganizationsInd
Grants To Individuals0GrantsToIndividualsInd
Schedule J RequiredYes (1)ScheduleJRequiredInd
Tax Exempt Bonds0TaxExemptBondsInd
Engaged In Excess Benefit Trans0EngagedInExcessBenefitTransInd
PY Excess Benefit Trans0PYExcessBenefitTransInd
Loan Outstanding0LoanOutstandingInd
Grant To Related Person0GrantToRelatedPersonInd
Business Rln With Org Mem0BusinessRlnWithOrgMemInd
Business Rln With Fam Mem0BusinessRlnWithFamMemInd
Business Rln With35 Ctrl Ent0BusinessRlnWith35CtrlEntInd
Deductible Non Cash Contri0DeductibleNonCashContriInd
Deductible Art Contribution0DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded Entity0DisregardedEntityInd
Related Entity0RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document14IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee0EmployeeCnt
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo Contributions0QuidProQuoContributionsInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services0IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt0SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc0SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members15GoverningBodyVotingMembersCnt
Independent Voting Member14IndependentVotingMemberCnt
Family Or Business Rln0FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org Documents0ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or Stockholders0MembersOrStockholdersInd
Election Of Board Members0ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (1)MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local Chapters0LocalChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower Policy0WhistleblowerPolicyInd
Document Retention Policy0DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process OtherYes (1)CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
Other WebsiteYes (X)OtherWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1EASY OFFICE DBA JITASABusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone2025994465PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line11120 S RACKHAM WAY SUITE 300AddressLine1Txt
CityMERIDIANCityNm
State AbbreviationIDStateAbbreviationCd
ZIP83642ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (16 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorInd
AMY GRAY
CEO40Yes (X)$352,756$0$0
STEPHANIE TOMLINSON
BOARD MEMBER2$1,554$0$0Yes (X)
MEGHAN HALLEY
BOARD CHAIRMAN10Yes (X)$0$0$0Yes (X)
F SESSIONS COLE
SECRETARY10Yes (X)$0$0$0Yes (X)
TROY EVANS
TREASURER10Yes (X)$0$0$0Yes (X)
ANNE PARISER
BOARD MEMBER2$0$0$0Yes (X)
EFFIE PARKS
BOARD MEMBER2$0$0$0Yes (X)
GERALD SWEENEY
BOARD MEMBER2$0$0$0Yes (X)
LILIANA FERNANDEZ
BOARD MEMBER2$0$0$0Yes (X)
PARVATHY KRISHNAN
BOARD MEMBER2$0$0$0Yes (X)
SIKA DUNYOH
BOARD MEMBER2$0$0$0Yes (X)
STEPHAN ZUCHNER
BOARD MEMBER2$0$0$0Yes (X)
TOM KELLEY
BOARD MEMBER2$0$0$0Yes (X)
TANIA SIMONCELLI
BOARD MEMBER2$0$0$0Yes (X)
JESSICA SWANSON
BORAD MEMBER2$0$0$0Yes (X)
KELLY CERVENTES
BOARD MEMBER2$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$354,310TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$0TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K1IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (4 entries)

Address Line1ContractorAddress/USAddress/AddressLine1TxtCityContractorAddress/USAddress/CityNmState AbbreviationContractorAddress/USAddress/StateAbbreviationCdZIPContractorAddress/USAddress/ZIPCdServicesServicesDescCompensationCompensationAmt
AMY GRAY
76 PACER CIRCLEWELLINGTONFL33414STRATEGIC LEADERSHIP$352,756
MICHELLE HERNDON
6932 RAVENSCROFT DRST LOUISMO63123PATIENT NAVIGATION$163,053
CHRISTIAN BAILEY SISCOE
46 GLADNEY LOOPRAYVILLELA71269PATIENT NAVIGATION$108,161
FINN PARTNERS INC
1675 BROADWAYNEW YORKNY10019COMMUNICATIONS SUPPORT$100,755
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K4CntrctRcvdGreaterThan100KCnt
Federated Campaigns$0FederatedCampaignsAmt
Membership Dues$0MembershipDuesAmt
Fundraising$0FundraisingAmt
Related Organizations$0RelatedOrganizationsAmt
Government Grants$0GovernmentGrantsAmt
All Other Contributions$324,360AllOtherContributionsAmt
Noncash Contributions$0NoncashContributionsAmt
Total Contributions$324,360TotalContributionsAmt
Total Program Service Revenue$0TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$4,638TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$4,638ExclusionAmt

Incm From Invest Bond Proceeds IncmFromInvestBondProceedsGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$0ExclusionAmt

Royalties Revenue RoyaltiesRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$0ExclusionAmt

Rental Income Or Loss RentalIncomeOrLossGrp

FieldValueIRS element (for citing)
Real$0RealAmt
Personal$0PersonalAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$0SecuritiesAmt
Other$0OtherAmt
FieldValueIRS element (for citing)
Contri Rpt Fundraising Event$0ContriRptFundraisingEventAmt
Other Revenue Total$0OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$328,998TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$4,638ExclusionAmt
FieldValueIRS element (for citing)
Info In Schedule O Part IXYes (X)InfoInScheduleOPartIXInd

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$2,500TotalAmt
Program Services$2,500ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$354,309TotalAmt
Program Services$353,336ProgramServicesAmt
Management And General$560ManagementAndGeneralAmt
Fundraising$413FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$15,420TotalAmt
Management And General$15,420ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$950,270TotalAmt
Program Services$946,946ProgramServicesAmt
Management And General$2,362ManagementAndGeneralAmt
Fundraising$962FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$3,590TotalAmt
Program Services$3,590ProgramServicesAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$14,334TotalAmt
Program Services$7,765ProgramServicesAmt
Management And General$774ManagementAndGeneralAmt
Fundraising$5,795FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$5,056TotalAmt
Program Services$5,056ProgramServicesAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$17,276TotalAmt
Program Services$16,568ProgramServicesAmt
Fundraising$708FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$32,341TotalAmt
Program Services$32,341ProgramServicesAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$856TotalAmt
Management And General$856ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (2 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
PROGRAM EXPENSES$22,601$22,601$0$0
SUBSCRIPTIONS$8,058$8,058$0$0

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$1,295TotalAmt
Program Services$1,000ProgramServicesAmt
Management And General$295ManagementAndGeneralAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$1,427,906TotalAmt
Program Services$1,399,761ProgramServicesAmt
Management And General$20,267ManagementAndGeneralAmt
Fundraising$7,878FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$381,066BOYAmt
EOY$207,804EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$2,007,663BOYAmt
EOY$1,234,521EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$15,000BOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Receivables From Officers Etc ReceivablesFromOfficersEtcGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Rcvbl From Disqualified Prsn RcvblFromDisqualifiedPrsnGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Inventories For Sale Or Use InventoriesForSaleOrUseGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$3,099LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$913LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$2,608BOYAmt
EOY$2,186EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Investments Other Securities InvestmentsOtherSecuritiesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Investments Program Related InvestmentsProgramRelatedGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Intangible Assets IntangibleAssetsGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$2,406,337BOYAmt
EOY$1,444,511EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$35,236BOYAmt
EOY$47,368EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Tax Exempt Bond Liabilities TaxExemptBondLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Escrow Account Liability EscrowAccountLiabilityGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Mortg Notes Pybl Scrd Invst Prop MortgNotesPyblScrdInvstPropGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Unsecured Notes Loans Payable UnsecuredNotesLoansPayableGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$35,236BOYAmt
EOY$47,368EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$2,371,101BOYAmt
EOY$1,397,143EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$2,371,101BOYAmt
EOY$1,397,143EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$2,406,337BOYAmt
EOY$1,444,511EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$1,098,908ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$95,250NetUnrlzdGainsLossesInvstAmt
Donated Services And Use Fclts$0DonatedServicesAndUseFcltsAmt
Investment Expense$0InvestmentExpenseAmt
Prior Period Adjustments$29,700PriorPeriodAdjustmentsAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS Audited0FSAuditedInd
Federal Grant Audit Required0FederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus2 Years$4,900CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,571,504CurrentTaxYearMinus1YearAmt
Current Tax Year$324,360CurrentTaxYearAmt
Total$2,900,764TotalAmt

Tax Rev Levied Orgnztnl Bnft170 TaxRevLeviedOrgnztnlBnft170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus1 Year$0CurrentTaxYearMinus1YearAmt
Total$0TotalAmt

Govt Furn Srvc Fclts Vl170 GovtFurnSrvcFcltsVl170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus1 Year$0CurrentTaxYearMinus1YearAmt
Total$0TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$0CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$0CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$4,900CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,571,504CurrentTaxYearMinus1YearAmt
Current Tax Year$324,360CurrentTaxYearAmt
Total$2,900,764TotalAmt
FieldValueIRS element (for citing)
Public Support Total170$2,900,764PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus1 Year$8,321CurrentTaxYearMinus1YearAmt
Current Tax Year$4,638CurrentTaxYearAmt
Total$12,959TotalAmt

Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus1 Year$0CurrentTaxYearMinus1YearAmt
Total$0TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus1 Year$0CurrentTaxYearMinus1YearAmt
Total$0TotalAmt
FieldValueIRS element (for citing)
Total Support$2,913,723TotalSupportAmt
First5 Years170Yes (X)First5Years170Ind

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule C IRS990ScheduleC

FieldValueIRS element (for citing)
VolunteersYes (1)VolunteersInd
Paid Staff Or ManagementYes (1)PaidStaffOrManagementInd
Media Advertisements0MediaAdvertisementsInd
Mailings MembersYes (1)MailingsMembersInd
Mailings Members$9,175MailingsMembersAmt
Publications Or Broadcast0PublicationsOrBroadcastInd
Grants Other Organizations0GrantsOtherOrganizationsInd
Direct Contact LegislatorsYes (1)DirectContactLegislatorsInd
Direct Contact Legislators$11,588DirectContactLegislatorsAmt
Rallies Demonstrations0RalliesDemonstrationsInd
Other Activities0OtherActivitiesInd
Total Lobbying Expenditures$20,763TotalLobbyingExpendituresAmt
Not Described Section501c30NotDescribedSection501c3Ind

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferenceSchedule C, Part II-B, Line 1FormAndLineReferenceDesc
ExplanationUDNF ADVOCATED TO MEMBERS OF CONGRESS AND THEIR STAFF FOR BIOMEDICAL RESEARCH FUNDING AS A WAY TO DELIVER ON ITS MISSION TO IMPROVE ACCESS TO A DIAGNOSIS FOR PEOPLE FACING RARE AND ULTRA-RARE CONDITIONS. THIS INCLUDED EXPENDITURES FOR A CONTRACTOR TO SUPPORT THE WORK, STAFF TIME DEDICATED TO THESE GOALS, AND VOLUNTEER AND STAFF TRAVEL FOR MEETINGS ON CAPITOL HILL.ExplanationTxt

Schedule D IRS990ScheduleD

Land LandGrp

FieldValueIRS element (for citing)
Investment Cost Or Other Basis$0InvestmentCostOrOtherBasisAmt
Other Cost Or Other Basis$0OtherCostOrOtherBasisAmt
Book Value$0BookValueAmt

Buildings BuildingsGrp

FieldValueIRS element (for citing)
Investment Cost Or Other Basis$0InvestmentCostOrOtherBasisAmt
Other Cost Or Other Basis$0OtherCostOrOtherBasisAmt
Depreciation$0DepreciationAmt
Book Value$0BookValueAmt

Leasehold Improvements LeaseholdImprovementsGrp

FieldValueIRS element (for citing)
Investment Cost Or Other Basis$0InvestmentCostOrOtherBasisAmt
Other Cost Or Other Basis$0OtherCostOrOtherBasisAmt
Depreciation$0DepreciationAmt
Book Value$0BookValueAmt

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Investment Cost Or Other Basis$0InvestmentCostOrOtherBasisAmt
Other Cost Or Other Basis$3,099OtherCostOrOtherBasisAmt
Depreciation$913DepreciationAmt
Book Value$2,186BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Investment Cost Or Other Basis$0InvestmentCostOrOtherBasisAmt
Other Cost Or Other Basis$0OtherCostOrOtherBasisAmt
Depreciation$0DepreciationAmt
Book Value$0BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$2,186TotalBookValueLandBuildingsAmt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Independent ConsultantYes (X)IndependentConsultantInd
Form990 Of Other OrganizationsYes (X)Form990OfOtherOrganizationsInd
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
Severance Payment0SeverancePaymentInd
Supplemental Nonqual Rtr Plan0SupplementalNonqualRtrPlanInd
Equity Based Comp Arrngm0EquityBasedCompArrngmInd
Comp Based On Revenue Of Flng Org0CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related Orgs0CompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng Org0CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd Orgs0CompBsdNetEarnsRltdOrgsInd
Any Non Fixed Payments0AnyNonFixedPaymentsInd
Initial Contract Exception0InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp

FieldValueIRS element (for citing)
PersonAMY GRAYPersonNm
TitleCEOTitleTxt
Base Compensation Filing Org$352,756BaseCompensationFilingOrgAmt
Compensation Based On Rltd Orgs$0CompensationBasedOnRltdOrgsAmt
Bonus Filing Organization$0BonusFilingOrganizationAmount
Bonus Related Organizations$0BonusRelatedOrganizationsAmt
Other Compensation Filing Org$0OtherCompensationFilingOrgAmt
Other Compensation Rltd Orgs$0OtherCompensationRltdOrgsAmt
Deferred Compensation Flng Org$0DeferredCompensationFlngOrgAmt
Deferred Comp Rltd Orgs$0DeferredCompRltdOrgsAmt
Nontaxable Benefits Filing Org$0NontaxableBenefitsFilingOrgAmt
Nontaxable Benefits Rltd Orgs$0NontaxableBenefitsRltdOrgsAmt
Total Compensation Filing Org$352,756TotalCompensationFilingOrgAmt
Total Compensation Rltd Orgs$0TotalCompensationRltdOrgsAmt
Comp Report Prior990 Filing Org$0CompReportPrior990FilingOrgAmt
Comp Report Prior990 Rltd Orgs$0CompReportPrior990RltdOrgsAmt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (5 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Form 990, Part VI, Section B, Line 11bTHE FORM 990 IS PRESENTED AND SHARED AT THE BOARD MEETING.
Form 990, Part VI, Section B, Line 12cTHE CONFLICT OF INTEREST POLICY IS REVIEWED ANNUALLY WITH THE BOARD DURING MEETING AND DURING BOARD ORIENTATION WITH THE NEW MEMBERS.
Form 990, Part VI, Section B, Line 15COMPENSATION BENCHMARK REPORTS SUCH AS GUIDESTARS ANNUAL COMPENSATION BENCHMARK REPORT WAS UTILIZED TO ESTABLISH COMPENSATION.
Form 990, Part VI, Section C, Line 19THE ORGANIZATION'S DOCUMENTS ARE AVAILABLE TO THE PUBLIC UPON REQUEST. THE FORM 990S CAN BE FOUND ON WEBSITES - IRS.GOV AND GUIDESTAR.ORG.
Form 990, Part IX, Line 11gOTHER FEES INCLUDES CONTRACT SERVICES SUCH AS IT CONSULTANT AND MARKETING CONSULTANT.

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