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NATIONAL ORGANIZATION FOR RARE DISORDERS INC: Form 990, tax year 2024

View the entire original 990 at ProPublica ↗

Organization
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (EIN 13-3223946)
Tax period
2024-01-01 to 2024-12-31
Filed
2025-06-09
IRS object ID
202521609349300767
Schema version
2024v5.1
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)
Return2025-06-09T08:37:51-05:00ReturnTs
Tax Period End2024-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN042571780PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1AAFCPAS INCBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line150 WASHINGTON STREETAddressLine1Txt
CityWESTBOROUGHCityNm
State AbbreviationMAStateAbbreviationCd
ZIP01581ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2024-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN133223946EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1NATIONAL ORGANIZATION FOR RAREBusinessNameLine1Txt
Business Name Line2DISORDERS INCBusinessNameLine2Txt
FieldValueIRS element (for citing)
Business Name ControlNATIBusinessNameControlTxt
Phone6172497300PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line11900 CROWN COLONY DR 3RD FL 310AddressLine1Txt
CityQUINCYCityNm
State AbbreviationMAStateAbbreviationCd
ZIP02169ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonNEETA KOTECHAPersonNm
Person TitleVP AND CHIEF FINANCIAL OFFICERPersonTitleTxt
Phone6172497300PhoneNum
Signature2025-06-06SignatureDt
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 PersonCOURTNEY MCFARLAND CPAPreparerPersonNm
PTINP01645518PTIN
Phone5083669100PhoneNum
Preparation2025-06-06PreparationDt
FieldValueIRS element (for citing)
Tax2024TaxYr
Build TS2025-03-06 01:10:19ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerNEETA KOTECHAPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line11900 CROWN COLONY DR 3RD FL 310AddressLine1Txt
CityQUINCYCityNm
State AbbreviationMAStateAbbreviationCd
ZIP02169ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$95,605,754GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.RAREDISEASES.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1983FormationYr
Legal Domicile StateNYLegalDomicileStateCd
Activity Or MissionNORD STRIVES TO IMPROVE THE HEALTH AND WELL-BEING OF PEOPLE WITH RARE DISEASES BY DRIVING ADVANCES IN CARE, RESEARCH, AND POLICY.ActivityOrMissionDesc
Voting Members Governing Body12VotingMembersGoverningBodyCnt
Voting Members Independent11VotingMembersIndependentCnt
Total Employee124TotalEmployeeCnt
Total Volunteers1181TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$55,591,572PYContributionsGrantsAmt
CY Contributions Grants$40,390,497CYContributionsGrantsAmt
PY Program Service Revenue$8,312,225PYProgramServiceRevenueAmt
CY Program Service Revenue$7,674,762CYProgramServiceRevenueAmt
PY Investment Income$2,493,656PYInvestmentIncomeAmt
CY Investment Income$2,611,539CYInvestmentIncomeAmt
PY Other Revenue$0PYOtherRevenueAmt
CY Other Revenue$0CYOtherRevenueAmt
PY Total Revenue$66,397,453PYTotalRevenueAmt
CY Total Revenue$50,676,798CYTotalRevenueAmt
PY Grants And Similar Paid$35,012,233PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$23,396,846CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$11,769,993PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$12,577,235CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$3,164,405CYTotalFundraisingExpenseAmt
PY Other Expenses$6,050,513PYOtherExpensesAmt
CY Other Expenses$7,060,381CYOtherExpensesAmt
PY Total Expenses$52,832,739PYTotalExpensesAmt
CY Total Expenses$43,034,462CYTotalExpensesAmt
PY Revenues Less Expenses$13,564,714PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$7,642,336CYRevenuesLessExpensesAmt
Total Assets BOY$65,154,464TotalAssetsBOYAmt
Total Assets EOY$72,321,740TotalAssetsEOYAmt
Total Liabilities BOY$4,533,021TotalLiabilitiesBOYAmt
Total Liabilities EOY$3,745,803TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$60,621,443NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$68,575,937NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionNORD STRIVES TO IMPROVE THE HEALTH AND WELL-BEING OF PEOPLE WITH RARE DISEASES BY DRIVING ADVANCES IN CARE, RESEARCH, AND POLICY.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$27,777,318ExpenseAmt
Grant$23,396,846GrantAmt
Revenue$4,712,716RevenueAmt
DescNORD PATIENT ASSISTANCE PROGRAMS PROVIDE ELIGIBLE INDIVIDUALS WITH THE FINANCIAL ASSISTANCE FOR THE GREATEST BREADTH OF CARE AND TREATMENT NEEDS TO MANAGE THEIR RARE DIAGNOSES. OUR DISEASE-STATE SPECIFIC PROGRAMS TAKE INTO CONSIDERATION THE NUANCES OF INDIVIDUAL DISEASE AND THE UNIQUE NEEDS OF THE PATIENT POPULATION. THIS INCLUDES ASSISTANCE WITH HEALTH INSURANCE PREMIUMS, COPAYMENTS, AND COINSURANCE AS WELL AS CERTAIN OUT-OF-POCKET EXPENSES. OUR APPROACH ENSURES THAT ELIGIBLE INDIVIDUALS WHO HAVE HEALTH INSURANCE (COMMERCIAL AND/OR PUBLIC INSURANCE), AS WELL AS INDIVIDUALS WHO ARE UNINSURED OR UNDERINSURED, RECEIVE THE FINANCIAL ASSISTANCE NECESSARY TO ACCESS THE CARE AND TREATMENT PRESCRIBED BY THEIR HEALTH CARE PROVIDER(S). IN 2024, NORD PATIENT ASSISTANCE PROGRAMS PROVIDED FINANCIAL ASSISTANCE TO A TOTAL OF 6,268 INDIVIDUALS. THIS INCLUDED 6,024 ASSISTED THROUGH OUR PAP PROGRAMS AND CLINICAL TRIAL TRAVEL AND LODGING SUPPORT FOR 244 INDIVIDUALS IN 2024.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$2,106,223ExpenseAmt
Revenue$2,017,947RevenueAmt
DescNORD'S EDUCATIONAL INITIATIVES STRIVE TO EMPOWER PATIENTS AND THEIR FAMILIES, INFORM AND EDUCATE STUDENTS ACROSS DISCIPLINES FROM HIGH SCHOOL THROUGH GRADUATE SCHOOL, AND SUPPORT THE VITALLY IMPORTANT WORK OF PHYSICIANS AND OTHER HEALTHCARE PROFESSIONALS IN IMPROVING THE RECOGNITION OF SYMPTOMS OF RARE DISEASE AND EARLY, ACCURATE DIAGNOSIS AS WELL AS IMPROVING CLINICIAN KNOWLEDGE AND COMPETENCE IN TREATING RARE DISEASES. THIS IS DONE THROUGH THE DEVELOPMENT OF NORD'S RARE DISEASE DATABASE, THE DELIVERY OF RARE DISEASE VIDEOS AND WEBINARS, AND THROUGH ROBUST EDUCATIONAL PROGRAMMING WITH NORD'S CME PROGRAM AND AT THE LIVING RARE, LIVING STRONGER NORD PATIENT AND FAMILY FORUM AND THE NORD RARE DISEASES AND ORPHAN PRODUCTS SUMMIT. IN 2024, 794 PEOPLE ATTENDED THE NORD SUMMIT IN PERSON, AND 64 PEOPLE REGISTERED FOR VIRTUAL STREAMING OF THE MEETING. ALSO, IN 2024, THERE WERE OVER 15 MILLION VISITORS TO NORD'S RARE DISEASE DATABASE.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$3,280,664ExpenseAmt
Revenue$944,099RevenueAmt
DescIN 2024, NORD CONTINUED TO DEVELOP THE IAMRARE NATURAL HISTORY/REGISTRY PLATFORM AND PROGRAM TO HELP RESEARCHERS BETTER UNDERSTAND THE PATIENT EXPERIENCE AND PROMOTE THE DEVELOPMENT OF INNOVATIVE, SAFE, AND EFFECTIVE THERAPIES. NEW IAMRARE PLATFORM FEATURES ADDED THIS YEAR INCLUDED ENHANCEMENTS TO THE USER EXPERIENCE AND SUPPORT FOR ADDITIONAL LANGUAGES (SPANISH AND FRENCH). AS OF 12-31-2024, THERE WERE 17,591 CONSENTED PARTICIPANTS ACROSS 44 REGISTRIES REPRESENTING MORE THAN 140 RARE DISEASES. IN ADDITION, AS OF 12-31-2024, THE RESEARCH TEAM WAS SUPPORTING THE DEVELOPMENT OF 30 NEW RARE DISEASE REGISTRIES.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp (3 entries)

ExpenseExpenseAmtDescDesc
$1,220,481NORD'S ADVOCACY EFFORTS ARE FOCUSED ON SERVING AS A LIAISON BETWEEN THE RARE DISEASE COMMUNITY AND THE VARIOUS ORGANIZATIONS AND INSTITUTIONS THAT HAVE A DIRECT IMPACT ON THE LIVES OF THE 30 MILLION AMERICANS LIVING WITH RARE DISEASES. NORD ENGAGES ALL TYPES OF ORGANZIATIONS, INCLUDING STATE AND FEDERAL AGENCIES AND LEGISLATORS, OTHER NON-PROFIT ORGANIZATIONS, AND FOR-PROFIT ORGANIZATIONS TO HELP RAISE AWARENESS AROUND THE NEEDS OF RARE DISEASE PATIENTS AND TO COLLECTIVELY CONTRIBUTE TO REALIZING SOLUTIONS THAT CAN POSITIVELY IMPACT THE DIVERSE RARE DISEASE COMMUNITY.
$379,805AS THE LEADING RARE DISEASE UMBRELLA ORGANIZATION IN THE UNITED STATES, THE NATIONAL ORGANIZATION FOR RARE DISORDERS PROVIDES ITS MEMBER ORGANIZATIONS WITH COMPREHENSIVE SUPPORT IN ADVOCACY, EDUCATION, RESEARCH, PROFESSIONAL DEVELOPMENT, ORGANIZATIONAL LEADERSHIP, AND COMMUNICATIONS. THROUGH OUR PROGRAMS AND SERVICES, WE EQUIP ORGANIZATIONAL LEADERS AND MEMBERS WITH THE ESSENTIAL TOOLS AND RESOURCES NEEDED TO STAY INFORMED, CONNECTED, AND EMPOWERED AS THEY ESTABLISH, GROW, AND STRENGTHEN THEIR ORGANIZATIONS. AS OF DECEMBER 2024, NORD PROUDLY SUPPORTED 356 MEMBER PATIENT ORGANIZATIONS.
$1,068,710THE NORD RARE DISEASE CENTERS OF EXCELLENCE PROGRAM WAS ESTABLISHED TO SELECT AND TO COLLABORATE WITH A NETWORK OF US MEDICAL INSTITUTIONS WITH EXCEPTIONAL CLINICAL AND RESEARCH PROGRAMS FOR PATIENTS WITH RARE DISEASES, WHO WILL WORK COLLABORATIVELY WITH NORD, WITH ONE ANOTHER, AND WITH THEIR LOCAL COMMUNITIES OF PHYSICIANS, CAREGIVERS, AND PATIENTS TO SHARE EXPERT KNOWLEDGE, DEFINE STANDARDS OF PRACTICE FOR RARE DISEASES, ACCELERATE DIAGNOSIS, AND IMPROVE PATIENT CARE, TREATMENT, AND RESEARCH IN RARE DISEASES. AS OF DECEMBER 2024, THERE WERE 40 DESIGNATED NORD RARE DISEASE CENTERS OF EXCELLENCE.
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$2,668,996TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses$35,833,201TotalProgramServiceExpensesAmt
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 EndowmentsYes (1)DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other LiabilitiesYes (1)ReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (1)IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign ActivitiesYes (1)ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
More Than5000 K To IndividualsYes (1)MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising Activities0FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To IndividualsYes (1)GrantsToIndividualsInd
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 Document44IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee124EmployeeCnt
Employment Tax Returns FiledYes (1)EmploymentTaxReturnsFiledInd
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 Members12GoverningBodyVotingMembersCnt
Independent Voting Member11IndependentVotingMemberCnt
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 ChaptersYes (1)LocalChaptersInd
Policies Reference ChaptersYes (1)PoliciesReferenceChaptersInd
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 PolicyYes (1)WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process OtherYes (1)CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldALStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldGAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNMStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOKStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldORStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldRIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldSCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldVAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldARStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldHIStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1NEETA KOTECHABusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone6172497300PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line11900 CROWN COLONY DRIVE 3RD FLOORAddressLine1Txt
CityQUINCYCityNm
State AbbreviationMAStateAbbreviationCd
ZIP02169ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (21 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtHighest Compensated EmployeeHighestCompensatedEmployeeInd
PETER SALTONSTALL
CEO (UNTIL 5/24)/CEO EMERITUS (AS OF 5/24)35.00Yes (X)Yes (X)$374,441$0$24,515
KATHLEEN HOLCOMBE
CHAIR10.00Yes (X)Yes (X)$0$0$0
SHELDON SCHUSTER PHD
VICE CHAIR5.00Yes (X)Yes (X)$0$0$0
LEON EIDELMAN
TREASURER (UNTIL 12/24)5.00Yes (X)Yes (X)$0$0$0
JIM PALMA
SECRETARY5.00Yes (X)Yes (X)$0$0$0
DENNIS JACKMAN
DIRECTOR1.00Yes (X)$0$0$0
MARK SKINNER
DIRECTOR1.00Yes (X)$0$0$0
SUSAN BERRY MD
DIRECTOR1.00Yes (X)$0$0$0
SHAFALI JESTE MD
DIRECTOR1.00Yes (X)$0$0$0
PHILLIP PEARL MD
DIRECTOR1.00Yes (X)$0$0$0
MIKE PORATH
DIRECTOR1.00Yes (X)$0$0$0
TOM KELLY
DIRECTOR1.00Yes (X)$0$0$0
LORNA WEIR
DIRECTOR1.00Yes (X)$0$0$0
PAMELA GAVIN
EVP (UNTIL 5/24)/CEO (AS OF 5/24)35.00Yes (X)$441,759$0$33,733
NEETA KOTECHA
VP & CFO35.00Yes (X)$179,637$0$42,329
KELLEEN ESPERIAS
CHIEF STRATEGY & OPERATIONS OFFICER35.00Yes (X)$71,108$0$6,327
EDWARD NEILAN
CHIEF MEDICAL & SCIENTIFIC OFFICER35.00$270,662$0$61,615Yes (X)
PRASHANT GOEL
VP INFORMATION TECHNOLOGY35.00$283,442$0$14,622Yes (X)
PATRICK COLLINS
VP COMMUNITY & CORPORATE AFFAIRS35.00$207,141$0$58,445Yes (X)
ALEXANDRA MOORE
VP OF DEVELOPMENT35.00$245,775$0$12,284Yes (X)
JILL POLLANDER
VP PATIENT SERVICES35.00$182,382$0$25,766Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$2,256,347TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$279,636TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K28IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (3 entries)

Address Line1ContractorAddress/USAddress/AddressLine1TxtCityContractorAddress/USAddress/CityNmState AbbreviationContractorAddress/USAddress/StateAbbreviationCdZIPContractorAddress/USAddress/ZIPCdServicesServicesDescCompensationCompensationAmt
FUTURE DMZ FUTURE LIMO
67-1185 MAMALAHOA HWY D104KAMUELAHI96743PATIENT SERVICE$332,640
ZUCKERMAN SPAEDER LLP
1800 M STREET NW SUITE 1000WASHINGTONDC20036LEGAL SERVICES$107,332
KENDALL SQUARE POLICY STRATEGIESLLC
716 BEACON ST PO BOX 263NEWTONMA02459CONSULTING SERVICES$103,087
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K3CntrctRcvdGreaterThan100KCnt
Membership Dues$2,169,556MembershipDuesAmt
Government Grants$1,674,930GovernmentGrantsAmt
All Other Contributions$36,546,011AllOtherContributionsAmt
Total Contributions$40,390,497TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (5 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
PATIENT ASSISTANCE FEE624100$4,586,291$4,586,291
PROGRAMMATIC EVENTS AN624100$1,743,097$1,743,097
REGISTRY AND OTHER FEE624100$1,107,915$1,107,915
DRUG, TRAVEL AND LODGI624100$126,426$126,426
RESEARCH FEES624100$111,033$111,033
FieldValueIRS element (for citing)
Total Program Service Revenue$7,674,762TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$2,489,178TotalRevenueColumnAmt
Exclusion$2,489,178ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$45,051,317SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$44,928,956SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$122,361SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$122,361TotalRevenueColumnAmt
Exclusion$122,361ExclusionAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$50,676,798TotalRevenueColumnAmt
Related Or Exempt Func Income$7,674,762RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$2,611,539ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$40,000TotalAmt
Program Services$40,000ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$23,001,503TotalAmt
Program Services$23,001,503ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$355,343TotalAmt
Program Services$355,343ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$1,173,848TotalAmt
Program Services$579,870ProgramServicesAmt
Management And General$323,176ManagementAndGeneralAmt
Fundraising$270,802FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$8,873,978TotalAmt
Program Services$5,380,666ProgramServicesAmt
Management And General$2,157,546ManagementAndGeneralAmt
Fundraising$1,335,766FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$365,446TotalAmt
Program Services$245,219ProgramServicesAmt
Management And General$81,973ManagementAndGeneralAmt
Fundraising$38,254FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$1,460,808TotalAmt
Program Services$1,165,278ProgramServicesAmt
Management And General$37,431ManagementAndGeneralAmt
Fundraising$258,099FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$703,155TotalAmt
Program Services$350,765ProgramServicesAmt
Management And General$258,020ManagementAndGeneralAmt
Fundraising$94,370FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$245,408TotalAmt
Program Services$82,170ProgramServicesAmt
Management And General$146,488ManagementAndGeneralAmt
Fundraising$16,750FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$59,500TotalAmt
Management And General$59,500ManagementAndGeneralAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$263,131TotalAmt
Program Services$263,131ProgramServicesAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$23,889TotalAmt
Management And General$23,889ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$2,097,075TotalAmt
Program Services$1,412,479ProgramServicesAmt
Management And General$120,370ManagementAndGeneralAmt
Fundraising$564,226FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$602,149TotalAmt
Program Services$123,936ProgramServicesAmt
Management And General$416,372ManagementAndGeneralAmt
Fundraising$61,841FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$520,828TotalAmt
Program Services$255,905ProgramServicesAmt
Management And General$212,962ManagementAndGeneralAmt
Fundraising$51,961FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$93,992TotalAmt
Program Services$85,161ProgramServicesAmt
Management And General$4,713ManagementAndGeneralAmt
Fundraising$4,118FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$1,702,825TotalAmt
Program Services$1,401,071ProgramServicesAmt
Management And General$50,641ManagementAndGeneralAmt
Fundraising$251,113FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$917,962TotalAmt
Program Services$779,913ProgramServicesAmt
Management And General$2,296ManagementAndGeneralAmt
Fundraising$135,753FundraisingAmt

Other Expenses OtherExpensesGrp (2 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
MISCELLANEOUS$490,489$267,658$141,479$81,352
RESEARCH GRANT EXPENSE$43,133$43,133

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$43,034,462TotalAmt
Program Services$35,833,201ProgramServicesAmt
Management And General$4,036,856ManagementAndGeneralAmt
Fundraising$3,164,405FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$4,078,715BOYAmt
EOY$4,343,127EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$4,021,694BOYAmt
EOY$8,924,597EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$20,885,685BOYAmt
EOY$11,405,783EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$371,112BOYAmt
EOY$371,002EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$7,094,185LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$5,025,203LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$1,909,847BOYAmt
EOY$2,068,982EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$33,249,776BOYAmt
EOY$44,477,084EOYAmt

Intangible Assets IntangibleAssetsGrp

FieldValueIRS element (for citing)
BOY$108,039BOYAmt
EOY$102,597EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$529,596BOYAmt
EOY$628,568EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$65,154,464BOYAmt
EOY$72,321,740EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$2,676,954BOYAmt
EOY$1,716,009EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$672,379BOYAmt
EOY$675,513EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$513,639BOYAmt
EOY$527,082EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$670,049BOYAmt
EOY$827,199EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$4,533,021BOYAmt
EOY$3,745,803EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$11,194,506BOYAmt
EOY$10,013,533EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$49,426,937BOYAmt
EOY$58,562,404EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$60,621,443BOYAmt
EOY$68,575,937EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$65,154,464BOYAmt
EOY$72,321,740EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$7,642,336ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$312,158NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Info In Schedule O Part XIIYes (X)InfoInScheduleOPartXIIInd
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (1)AuditCommitteeInd
Federal Grant Audit RequiredYes (1)FederalGrantAuditRequiredInd
Federal Grant Audit PerformedYes (1)FederalGrantAuditPerformedInd

Schedule A IRS990ScheduleA

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

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$36,711,628CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$36,851,836CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$51,401,122CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$55,591,572CurrentTaxYearMinus1YearAmt
Current Tax Year$40,390,497CurrentTaxYearAmt
Total$220,946,655TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$36,711,628CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$36,851,836CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$51,401,122CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$55,591,572CurrentTaxYearMinus1YearAmt
Current Tax Year$40,390,497CurrentTaxYearAmt
Total$220,946,655TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$141,687,935SubstantialContributorsTotAmt
Public Support Total170$79,258,720PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$517,289CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$223,148CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$415,150CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,751,860CurrentTaxYearMinus1YearAmt
Current Tax Year$2,489,178CurrentTaxYearAmt
Total$5,396,625TotalAmt
FieldValueIRS element (for citing)
Total Support$226,343,280TotalSupportAmt
Gross Receipts Rltd Activities$36,105,834GrossReceiptsRltdActivitiesAmt
Public Support CY1700.35020PublicSupportCY170Pct
Public Support PY1700.31730PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

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

Total Grassroots Lobbying TotalGrassrootsLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$9,867FilingOrganizationsTotalAmt

Total Direct Lobbying TotalDirectLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$253,263FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$263,130FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$42,771,332FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$43,034,462FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$1,000,000FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$250,000FilingOrganizationsTotalAmt

Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Current Year Minus3$1,000,000CurrentYearMinus3Amt
Current Year Minus2$1,000,000CurrentYearMinus2Amt
Current Year Minus1$1,000,000CurrentYearMinus1Amt
Current Year$1,000,000CurrentYearAmt
Total$4,000,000TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$6,000,000LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$172,678CurrentYearMinus3Amt
Current Year Minus2$154,106CurrentYearMinus2Amt
Current Year Minus1$145,323CurrentYearMinus1Amt
Current Year$263,130CurrentYearAmt
Total$735,237TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$250,000CurrentYearMinus3Amt
Current Year Minus2$250,000CurrentYearMinus2Amt
Current Year Minus1$250,000CurrentYearMinus1Amt
Current Year$250,000CurrentYearAmt
Total$1,000,000TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$1,500,000GrassrootsCeilingAmt

Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$44,421CurrentYearMinus3Amt
Current Year Minus2$5,779CurrentYearMinus2Amt
Current Year Minus1$5,450CurrentYearMinus1Amt
Current Year$9,867CurrentYearAmt
Total$65,517TotalAmt

Schedule D IRS990ScheduleD

CY Endwmt Fund CYEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$221,500BeginningYearBalanceAmt
End Year Balance$221,500EndYearBalanceAmt

CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$221,500BeginningYearBalanceAmt
End Year Balance$221,500EndYearBalanceAmt

CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$221,500BeginningYearBalanceAmt
End Year Balance$221,500EndYearBalanceAmt

CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$200,000BeginningYearBalanceAmt
Contributions$21,500ContributionsAmt
End Year Balance$221,500EndYearBalanceAmt

CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp

FieldValueIRS element (for citing)
Contributions$200,000ContributionsAmt
End Year Balance$200,000EndYearBalanceAmt
FieldValueIRS element (for citing)
Prmnnt Endowment Balance EOY1.00000PrmnntEndowmentBalanceEOYPct
Endowments Held Unrelated Org0EndowmentsHeldUnrelatedOrgInd
Endowments Held Related Org0EndowmentsHeldRelatedOrgInd

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$37,726OtherCostOrOtherBasisAmt
Depreciation$33,622DepreciationAmt
Book Value$4,104BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$7,056,459OtherCostOrOtherBasisAmt
Depreciation$4,991,581DepreciationAmt
Book Value$2,064,878BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$2,068,982TotalBookValueLandBuildingsAmt

Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)

DescDescAmtAmt
DEFERRED COMPENSATION$188,754
OPERATING LEASE LIABILITY$638,445
FieldValueIRS element (for citing)
Total Liability$827,199TotalLiabilityAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$51,015,067TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$312,158NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$50,000DonatedServicesAndUseFcltsAmt
Revenue Not Reported$362,158RevenueNotReportedAmt
Revenue Subtotal$50,652,909RevenueSubtotalAmt
Investment Expenses Not Incld$23,889InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt$23,889RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$50,676,798TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$43,060,573TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$50,000DonatedServicesUseFcltsAmt
Expenses Not Reported$50,000ExpensesNotReportedAmt
Expenses Subtotal$43,010,573ExpensesSubtotalAmt
Investment Expenses Not Incld2$23,889InvestmentExpensesNotIncld2Amt
Expenses Not Rpt Fincl Stmt$23,889ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$43,034,462TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART V, LINE 4:NORD DEVELOPED A FORMAL ENDOWMENT SPENDING POLICY WHERE AS THE CORPUS SHALL NOT BE USED TO PAY CURRENT EXPENSES, OTHER THAN INVESTMENT SERVICE FEES. THE CORPUS SHALL BE INVESTED AND RETURNS MAY BE USED BY NORD ON AN ANNUAL BASIS, STARTING THREE YEARS AFTER THE FUNDS ARE INVESTED. THE ANNUAL SPENDING WILL BE CALCULATED AS THE GREATER OF ZERO OR HALF OF THE AVERAGE ANNUAL RETURN OVER THE PRIOR THREE YEARS, CALCULATED FROM THE CALENDAR YEAR-END BALANCE. NORD MAY DECIDE AT ITS DISCRETION TO DELAY OR FOREGO THE ANNUAL WITHDRAWAL FROM THE PORTFOLIO. NORD WILL NOT SPEND ENDOWED FUNDS FROM THE ENDOWMENT UNTIL AFTER MARCH 2024, THREE YEARS AFTER THE INITIAL INVESTMENT.
PART X, LINE 2:NORD ACCOUNTS FOR UNCERTAINTY IN INCOME TAXES IN ACCORDANCE WITH ASC TOPIC, INCOME TAXES. THIS STANDARD CLARIFIES THE ACCOUNTING FOR UNCERTAINTY IN TAX POSITIONS AND PRESCRIBES A RECOGNITION THRESHOLD AND MEASUREMENT ATTRIBUTE FOR THE FINANCIAL STATEMENTS REGARDING A TAX POSITION TAKEN OR EXPECTED TO BE TAKEN IN A TAX RETURN. NORD HAS DETERMINED THAT THERE ARE NO UNCERTAIN TAX POSITIONS WHICH QUALIFY FOR EITHER RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS AT DECEMBER 31, 2024. NORD'S INFORMATION RETURNS ARE SUBJECT TO EXAMINATION BY THE FEDERAL AND STATE JURISDICTIONS.

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Account Activities Outside US AccountActivitiesOutsideUSGrp (4 entries)

RegionRegionTxtOfficesOfficesCntEmployeeEmployeeCntType Of Activities ConductedTypeOfActivitiesConductedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM00GRANTS TO RECIPIENTS$6,830
NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES00GRANTS TO RECIPIENTS$82,681
SOUTH ASIA - AFGHANISTAN, BANGLADESH, BHUTAN, INDIA, MALDIVES, NEPAL,00GRANTS TO RECIPIENTS$258,316
EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA,00GRANTS TO RECIPIENTS$7,516
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continuation Total Office0ContinuationTotalOfficeCnt
Continuation Total Employee0ContinuationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$355,343SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$355,343TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp

FieldValueIRS element (for citing)
RegionSOUTH ASIA - AFGHANISTAN, BANGLADESH, BHUTAN, INDIA, MALDIVES, NEPAL,RegionTxt
Purpose Of GrantSOFTWARE IN DEVELOPMENTPurposeOfGrantTxt
Cash Grant$257,316CashGrantAmt
Manner Of Cash DisbursementBANK OF AMERICA INTERNATIONAL WIREMannerOfCashDisbursementTxt
Non Cash Assistance$0NonCashAssistanceAmt
Valuation Method UsedBOOKValuationMethodUsedDesc
FieldValueIRS element (for citing)
Total501c3 Org1Total501c3OrgCnt
Total Other Org6TotalOtherOrgCnt

Foreign Individuals Grants ForeignIndividualsGrantsGrp (5 entries)

Type Of AssistanceTypeOfAssistanceTxtRegionRegionTxtRecipientRecipientCntCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxtValuation Method UsedValuationMethodUsedDesc
CONSULTANTNORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES1$75,888WIREBOOK
TRAVEL REIMBURSEMENTNORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES4$2,751WIREBOOK
TRAVEL REIMBURSEMENTEUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIU2$759WIREBOOK
TRAVEL REIMBURSEMENTEAST ASIA AND THE PACIFIC6$7,516WIREBOOK
SPONSORSHIP COSTEAST ASIA AND THE PACIFIC2$1,000WIREBOOK
FieldValueIRS element (for citing)
Transfer To Foreign Corp0TransferToForeignCorpInd
Interest In Foreign Trust0InterestInForeignTrustInd
Foreign Corp Ownership0ForeignCorpOwnershipInd
Passive Foreign Investmest Co0PassiveForeignInvestmestCoInd
Foreign Partnership0ForeignPartnershipInd
Boycott Countries0BoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationANY GRANTS AND SUPPORT GIVEN ARE CLOSELY MONITORED VIA REVIEW OF BACKUP DOCUMENTATION AND PROOF OF EXPENSE.ExplanationTxt

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Recipient Table RecipientTable (2 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxtIRC SectionIRCSectionDesc
CHILDREN'S HOSPITAL OF PHILADELPHIA
3401 CIVIC CENTER BLVDPHILADELPHIAPA191044318231352166$15,000$0FIRST PAYMENT OF 2 FOR MMIHS RESEARCH
DREXEL UNIVERSITY
3201 ARCH STREET SUITE 400PHILADELPHIAPA19104231352630$25,000$0FINAL PAYMENT FOR ACPMP RESEARCH GRANT NORD ID 15005501C3
FieldValueIRS element (for citing)
Total501c3 Org1Total501c3OrgCnt
Total Other Org1TotalOtherOrgCnt

Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp

FieldValueIRS element (for citing)
Grant TypePATIENT ASSISTANCE PROGRAMSGrantTypeTxt
Recipient6268RecipientCnt
Cash Grant$23,001,503CashGrantAmt
Valuation Method UsedBOOKValuationMethodUsedDesc

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationANY GRANTS AND SUPPORT GIVEN ARE CLOSELY MONITORED VIA REVIEW OF BACKUP DOCUMENTATION AND PROOF OF EXPENSE.ExplanationTxt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Written Employment ContractYes (X)WrittenEmploymentContractInd
Compensation SurveyYes (X)CompensationSurveyInd
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 PaymentsYes (1)AnyNonFixedPaymentsInd
Initial Contract Exception0InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (8 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtCompensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmtBonus Filing OrganizationBonusFilingOrganizationAmountBonus Related OrganizationsBonusRelatedOrganizationsAmtOther Compensation Filing OrgOtherCompensationFilingOrgAmtOther Compensation Rltd OrgsOtherCompensationRltdOrgsAmtDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtDeferred Comp Rltd OrgsDeferredCompRltdOrgsAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtNontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmtTotal Compensation Rltd OrgsTotalCompensationRltdOrgsAmtComp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmtComp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt
PAMELA GAVIN
EVP (UNTIL 5/24)/CEO (AS OF 5/24)$416,759$0$25,000$0$0$0$17,250$0$16,483$0$475,492$0$0$0
PETER SALTONSTALL
CEO (UNTIL 5/24)/CEO EMERITUS (AS OF$349,441$0$25,000$0$0$0$17,250$0$7,265$0$398,956$0$0$0
EDWARD NEILAN
CHIEF MEDICAL & SCIENTIFIC OFFICER$270,662$0$0$0$0$0$14,420$0$47,195$0$332,277$0$0$0
PRASHANT GOEL
VP INFORMATION TECHNOLOGY$283,442$0$0$0$0$0$14,205$0$417$0$298,064$0$0$0
PATRICK COLLINS
VP COMMUNITY & CORPORATE AFFAIRS$207,141$0$0$0$0$0$11,250$0$47,195$0$265,586$0$0$0
ALEXANDRA MOORE
VP OF DEVELOPMENT$225,775$0$20,000$0$0$0$12,284$0$0$0$258,059$0$0$0
NEETA KOTECHA
VP & CFO$179,637$0$0$0$0$0$9,373$0$32,956$0$221,966$0$0$0
JILL POLLANDER
VP PATIENT SERVICES$182,382$0$0$0$0$0$9,283$0$16,483$0$208,148$0$0$0

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 7FormAndLineReferenceDesc
ExplanationTHE BOARD OF DIRECTORS REVIEWS EXTERNAL SURVEYS, DOL, BLS, AND ACCOUNTEMP SURVEYS FOR DECISIONS ON THE EXECUTIVE DIRECTOR'S COMPENSATION. THERE IS ALSO A SALARY ADMINISTRATION PLAN THAT TAKES INTO CONSIDERATION GEOGRAPHIC SETTINGS, SKILLS, AND EDUCATION.ExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (5 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION B, LINE 11BTHE 990 IS REVIEWED BY THE VP OF FINANCE, CEO, FINANCE COMMITTEE, AND AUDIT COMMITTEE PRIOR TO FILING. THE 990 IS PROVIDED TO ALL MEMBERS OF THE BOARD OF DIRECTORS FOR REVIEW PRIOR TO BEING FILED.
FORM 990, PART VI, SECTION B, LINE 12CTHE BOARD OF DIRECTORS ARE REQUIRED TO COMPLETE AN ANNUAL REVIEW OF THE ORGANIZATION'S CONFLICT OF INTEREST POLICY. THE MEMBERS OF THE BOARD ARE ANNUALLY REQUIRED TO REPORT IF THEY HAVE OR DO NOT HAVE ANY KNOWN CONFLICTS OF INTEREST. THE EXECUTIVE COMMITTEE IS ALSO REQUIRED TO ANNUALLY SIGN OFF AS TO ANY KNOWN CONFLICTS THAT EXIST.
FORM 990, PART VI, SECTION B, LINE 15THE BOARD OF DIRECTORS REVIEWS EXTERNAL MARKET SURVEYS, DOL, BLS, AND ACCOUNTEMP SURVEYS FOR DECISIONS ON THE EXECUTIVE DIRECTOR COMPENSATION. THERE IS ALSO A SALARY ADMINISTRATION PLAN THAT TAKES INTO CONSIDERATION GEOGRAPHIC SETTINGS, SKILLS, AND EDUCATION.
FORM 990, PART VI, SECTION C, LINE 19GOVERNING DOCUMENTS ARE MADE AVAILABLE UPON REQUEST.
FORM 990, PART XII, LINE 2C:THE BOARD OF DIRECTORS ASSUMES RESPONSIBILITY FOR OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS AND SELECTION OF AN INDEPENDENT ACCOUNTANT.