NATIONAL ORGANIZATION FOR RARE DISORDERS INC: Form 990, tax year 2020
View the entire original 990 at ProPublica ↗
- Organization
- NATIONAL ORGANIZATION FOR RARE DISORDERS INC (EIN 13-3223946)
- Tax period
- 2020-01-01 to 2020-12-31
- Filed
- 2021-07-16
- IRS object ID
- 202121979349300507
- Schema version
- 2020v4.1
- 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
- Form 990
- Schedule A
- Schedule B
- Schedule C
- Schedule D
- Schedule F
- Schedule I
- Schedule J
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2021-07-16T10:36:20-05:00 | ReturnTs |
| Tax Period End | 2020-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 042571780 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | AAFCPAS INC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 50 WASHINGTON STREET | AddressLine1Txt |
| City | WESTBOROUGH | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 01581 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2020-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 133223946 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | NATIONAL ORGANIZATION FOR RARE | BusinessNameLine1Txt |
| Business Name Line2 | DISORDERS INC | BusinessNameLine2Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | NATI | BusinessNameControlTxt |
| Phone | 6172497300 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1900 CROWN COLONY DR 3RD FL NO | AddressLine1Txt |
| City | QUINCY | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 02169 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | VINCENT J MURPHY JR | PersonNm |
| Person Title | VICE PRESIDENT OF FINANCE | PersonTitleTxt |
| Phone | 6172497300 | PhoneNum |
| Signature | 2021-07-15 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Signing Officer SigningOfficerGrp
Person Full Name PersonFullName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person First | VINCENT | PersonFirstNm |
| Person Last | MURPHY JR | PersonLastNm |
| Field | Value | IRS element (for citing) |
|---|---|---|
| SSN | XXX-XX-XXXX | SSN |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | COURTNEY MCFARLAND CPA | PreparerPersonNm |
| PTIN | P01645518 | PTIN |
| Phone | 5083669100 | PhoneNum |
| Preparation | 2021-07-15 | PreparationDt |
Additional Filer Information AdditionalFilerInformation
Trusted Customer TrustedCustomerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Trusted Customer | 2 | TrustedCustomerCd |
| Authentication Assurance Level | AAL1 | AuthenticationAssuranceLevelCd |
| Identity Assurance Level | IAL1 | IdentityAssuranceLevelCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2020 | TaxYr |
| Build TS | 2022-09-23 18:48:47Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | VINCENT J MURPHY JR | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1900 CROWN COLONY DR 3RD FL NO 310 | AddressLine1Txt |
| City | QUINCY | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 02169 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $44,101,310 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.RAREDISEASES.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1983 | FormationYr |
| Legal Domicile State | NY | LegalDomicileStateCd |
| Activity Or Mission | NORD STRIVES TO IMPROVE THE LIVES OF THOSE WITH RARE DISEASES THROUGH ASSISTANCE PROGRAMS, EDUCATION, ADVOCACY AND RESEARCH. | ActivityOrMissionDesc |
| Voting Members Governing Body | 13 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 12 | VotingMembersIndependentCnt |
| Total Employee | 99 | TotalEmployeeCnt |
| Total Volunteers | 316 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $43,644,020 | PYContributionsGrantsAmt |
| CY Contributions Grants | $36,711,628 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $8,392,510 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $5,782,111 | CYProgramServiceRevenueAmt |
| PY Investment Income | $595,629 | PYInvestmentIncomeAmt |
| CY Investment Income | $349,621 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$218,782 | PYOtherRevenueAmt |
| CY Other Revenue | $0 | CYOtherRevenueAmt |
| PY Total Revenue | $52,413,377 | PYTotalRevenueAmt |
| CY Total Revenue | $42,843,360 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $31,348,036 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $40,732,238 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $6,630,675 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $8,470,391 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $1,842,510 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $3,810,983 | PYOtherExpensesAmt |
| CY Other Expenses | $3,509,490 | CYOtherExpensesAmt |
| PY Total Expenses | $41,789,694 | PYTotalExpensesAmt |
| CY Total Expenses | $52,712,119 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $10,623,683 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$9,868,759 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $61,751,096 | TotalAssetsBOYAmt |
| Total Assets EOY | $52,774,540 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $2,331,773 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $3,206,888 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $59,419,323 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $49,567,652 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | NORD LEADS THE FIGHT TO IMPROVE THE LIVES OF PEOPLE AFFECTED BY RARE DISEASES THROUGH EDUCATION, PATIENT ASSISTANCE PROGRAMS, ADVOCACY, AND BY PROMOTING RESEARCH. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $42,897,127 | ExpenseAmt |
| Grant | $39,903,455 | GrantAmt |
| Revenue | $4,011,443 | RevenueAmt |
| Desc | PATIENT ASSISTANCE PROGRAMS PROVIDE FINANCIAL ASSISTANCE TO HELP ELIGIBLE PATIENTS ACCESS LIFESAVING THERAPIES AND SERVICES PRESCRIBED BY THEIR PHYSICIANS. IN 2020 NORD PROVIDED FINANCIAL ASSISTANCE TO 9,741 PEOPLE WITH RARE DISEASES. IN ADDITION, NORD WORKS WITH ORGANIZATIONS CONDUCTING CLINICAL TRIALS OF NEW TREATMENTS IN ARRANGING FOR PATIENTS WITH RARE DISEASES AND FAMILY MEMBERS TO TRAVEL TO THE SITES WHERE THE TRIALS ARE BEING CONDUCTED. IN 2020, THERE WERE 210 PATIENTS THAT NORD ASSISTED AS PART OF THAT SPECIAL CLINICAL TRIAL TRAVEL ASSISTANCE PROGRAM. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $980,435 | ExpenseAmt |
| Revenue | $153,704 | RevenueAmt |
| Desc | NORD EDUCATIONAL INITIATIVES STRIVE TO EMPOWER PATIENTS AND THEIR FAMILIES, INFORM STUDENTS OF ALL AGES, AND SUPPORT THE VITALLY IMPORTANT WORK OF PHYSICIANS AND OTHER HEALTHCARE PROFESSIONALS IN CREATING A BETTER UNDERSTANDING OF RARE DISEASES. THIS IS DONE THROUGH THE DEVELOPMENT OF NORD'S RARE DISEASE DATABASE, EDUCATIONAL WEBINARS AND VIDEOS, AND ROBUST EDUCATIONAL PROGRAMMING THROUGH NORD'S CME PARTNERSHIPS AND AT NORD'S RARE DISEASES AND ORPHAN PRODUCTS BREAKTHROUGH SUMMIT (RARE SUMMIT). IN 2020 OVER 800 PEOPLE VIRTUALLY ATTENDED NORD'S RARE SUMMIT WHERE KEY STAKEHOLDER IN THE RARE DISEASE SPACE GATHER TO LEARN, CONNECT, AND CREATE POSITIVE CHANGE FOR THE BROADER RARE DISEASE COMMUNITY. ALSO, IN 2020 THERE WERE OVER 12.5 MILLION VISITORS TO THE ORGANIZATION'S WEBSITE TO READ NORD'S RARE DISEASE REPORTS WHICH OFFER INFORMATION ABOUT EACH RARE DISEASE IN EASY TO UNDERSTAND LANGUAGE. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $2,544,856 | ExpenseAmt |
| Grant | $631,258 | GrantAmt |
| Revenue | $199,494 | RevenueAmt |
| Desc | IN 2020, NORD HAS CONTINUED TO DEVELOP ITS NATURAL HISTORY/REGISTRYPLATFORM TO HELP RESEARCHERS BETTER UNDERSTAND THE PATIENT EXPERIENCEAND PROMOTE DEVELOPMENT OF INNOVATIVE, SAFE AND EFFECTIVE THERAPIES. ASOF DECEMBER 31, 2020, THERE WERE 10,238 PARTICIPANTS ACROSS 30DISEASE-SPECIFIC DATABASES AS PART OF NORD'S REGISTRY PROGRAM.IN ADDITION, NORD AWARDED 10 GRANTS IN 2020 TO SUPPORT RESEARCH OF RAREDISEASES. THESE GRANTS ARE FUNDED BY CONTRIBUTIONS FROM THE PUBLIC,PATIENTS AND THEIR FAMILIES, AND PATIENT ORGANIZATIONS. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp (2 entries)
| ExpenseExpenseAmt | DescDesc | GrantGrantAmt | RevenueRevenueAmt |
|---|---|---|---|
| $836,751 | NORD'S ADVOCACY EFFORTS ARE FOCUSED ON SERVING AS A LIAISON BETWEEN THERARE DISEASE COMMUNITY AND THE VARIOUS ORGANIZATIONS AND INSTITUTIONSTHAT HAVE A DIRECT IMPACT ON THE LIVES OF THE 30 MILLION AMERICANSLIVING 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 POSITIVELY IMPACT THE DIVERSE RARE DISEASE COMMUNITY. | ||
| $763,944 | MEMBERSHIP: NORD WAS FOUNDED ON THE PRINCIPLES OF COLLABORATION AND AUNITED VOICE, AND WE PROVIDE GUIDANCE AND SUPPORT AT ALL PHASES OFDEVELOPMENT, AS ORGANIZATIONS EVOLVE. NORD OFFERS ITS MEMBERSEDUCATIONAL WEBINARS AND REGIONAL MEMBERSHIP MEETINGS PROVIDEOPPORTUNITIES TO INTERACT WITH OTHER LEADERSHIP OF OTHER PATIENTORGANIZATIONS AND TO BUILD CAPACITY BY ADOPTING BEST PRACTICES. AS OFDECEMBER 31, 2020 THERE WERE 326 PATIENT ORGANIZATIONS THAT WERE MEMBERS. | $197,525 | $1,417,470 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $1,600,695 | TotalOtherProgSrvcExpenseAmt |
| Total Other Prog Srvc Grant | $197,525 | TotalOtherProgSrvcGrantAmt |
| Total Other Prog Srvc Revenue | $1,417,470 | TotalOtherProgSrvcRevenueAmt |
| Total Program Service Expenses | $48,023,113 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | Yes (1) | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | Yes (1) | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (1) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (1) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | 0 | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | 0 | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (1) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | 0 | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | Yes (1) | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | 0 | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | 0 | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 32 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 99 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | 0 | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 13 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 12 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | 0 | MembersOrStockholdersInd |
| Election Of Board Members | 0 | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (1) | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | Yes (1) | LocalChaptersInd |
| Policies Reference Chapters | Yes (1) | PoliciesReferenceChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (1) | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | CT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NM | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | RI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | UT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | HI | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | VINCENT MURPHY | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 6172497300 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1900 CROWN COLONY DRIVE 3RD FLOOR | AddressLine1Txt |
| City | QUINCY | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 02169 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (20 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|
| PETER SALTONSTALL | |||||||
| PRESIDENT/CEO | 35.00 | Yes (X) | Yes (X) | $505,828 | $0 | $22,886 | |
| PAMELA GAVIN | |||||||
| CHIEF OPERATING OFFICER | 35.00 | Yes (X) | $329,943 | $0 | $24,121 | ||
| RACHEL SHER | |||||||
| VP POLICY & REGULATORY AFFAIRS | 35.00 | $225,539 | $0 | $12,544 | Yes (X) | ||
| PRASHANT GOEL | |||||||
| VP INFORMATION TECHNOLOGY | 35.00 | $225,269 | $0 | $10,777 | Yes (X) | ||
| ALEXA MOORE | |||||||
| VP OF DEVELOPMENT | 35.00 | $215,094 | $0 | $39,428 | Yes (X) | ||
| TIM EHRHARD | |||||||
| DIRECTOR OF IT | 35.00 | $161,533 | $0 | $36,752 | Yes (X) | ||
| JILL POLLANDER | |||||||
| DIRECTOR OF PATIENT SERVICES | 35.00 | $132,058 | $0 | $25,890 | Yes (X) | ||
| VINCENT J MURPHY JR | |||||||
| VP FINANCE | 35.00 | Yes (X) | $129,386 | $0 | $35,219 | ||
| MARSHALL L SUMMAR MD | |||||||
| CHAIR (UNTIL 12/9/2020) | 10.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| KATHLEEN HOLCOMBE | |||||||
| DIRECTOR/CHAIR (AS OF 12/9/2020) | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| STEVEN GROSSMAN | |||||||
| SECRETARY | 8.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| FREDERICK BARR MD | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| RONALD J BARTEK | |||||||
| DIRECTOR | 5.00 | Yes (X) | $0 | $0 | $0 | ||
| SUSAN HEDSTROM | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| JIM PALMA | |||||||
| DIRECTOR | 3.00 | Yes (X) | $0 | $0 | $0 | ||
| SUSAN BERRY | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| NEIL HORIKOSHI | |||||||
| DIRECTOR (UNTIL 12/9/20) | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| SHAFALI JESTE | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| PHILIP PEARL | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| MIKE PORATH | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $1,924,650 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $207,617 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 18 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp (2 entries)
| Address Line1ContractorAddress/USAddress/AddressLine1Txt | CityContractorAddress/USAddress/CityNm | State AbbreviationContractorAddress/USAddress/StateAbbreviationCd | ZIPContractorAddress/USAddress/ZIPCd | ServicesServicesDesc | CompensationCompensationAmt |
|---|---|---|---|---|---|
| FUTURE DMZ FUTURE LIMO | |||||
| 67-1185 MAMALAHOA HWY D104 | KAMUELA | HI | 96743 | PATIENT SERVICES | $385,140 |
| CLINE DAVIS & MANN LLC | |||||
| 220 E 42ND STREET | NEW YORK | NY | 10017 | IT CONSULTANT | $230,773 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 2 | CntrctRcvdGreaterThan100KCnt |
| Membership Dues | $2,180,562 | MembershipDuesAmt |
| All Other Contributions | $34,531,066 | AllOtherContributionsAmt |
| Total Contributions | $36,711,628 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (5 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| PATIENT ASSISTANCE FEE | 624100 | $3,222,874 | $3,222,874 |
| PROGRAMMATIC EVENTS AN | 624100 | $1,900,601 | $1,900,601 |
| REGISTRY, WEB SUBSCRIP | 624100 | $395,674 | $395,674 |
| RESEARCH FEES | 624100 | $195,537 | $195,537 |
| DRUG, TRAVEL AND LODGI | 624100 | $67,425 | $67,425 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $5,782,111 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $517,289 | TotalRevenueColumnAmt |
| Exclusion | $517,289 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other | $1,090,282 | OtherAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other | $1,257,950 | OtherAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other | -$167,668 | OtherAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$167,668 | TotalRevenueColumnAmt |
| Exclusion | -$167,668 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $42,843,360 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $5,782,111 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $349,621 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $631,258 | TotalAmt |
| Program Services | $631,258 | ProgramServicesAmt |
Grants To Domestic Individuals GrantsToDomesticIndividualsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $40,100,980 | TotalAmt |
| Program Services | $40,100,980 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,047,383 | TotalAmt |
| Program Services | $527,156 | ProgramServicesAmt |
| Management And General | $388,048 | ManagementAndGeneralAmt |
| Fundraising | $132,179 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,880,738 | TotalAmt |
| Program Services | $3,662,366 | ProgramServicesAmt |
| Management And General | $1,309,877 | ManagementAndGeneralAmt |
| Fundraising | $908,495 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $215,110 | TotalAmt |
| Program Services | $136,754 | ProgramServicesAmt |
| Management And General | $48,049 | ManagementAndGeneralAmt |
| Fundraising | $30,307 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $850,658 | TotalAmt |
| Program Services | $647,314 | ProgramServicesAmt |
| Management And General | $84,728 | ManagementAndGeneralAmt |
| Fundraising | $118,616 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $476,502 | TotalAmt |
| Program Services | $234,473 | ProgramServicesAmt |
| Management And General | $166,321 | ManagementAndGeneralAmt |
| Fundraising | $75,708 | FundraisingAmt |
Fees For Services Management FeesForServicesManagementGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $38,660 | TotalAmt |
| Management And General | $38,660 | ManagementAndGeneralAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $150,685 | TotalAmt |
| Program Services | $103,107 | ProgramServicesAmt |
| Management And General | $31,679 | ManagementAndGeneralAmt |
| Fundraising | $15,899 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $48,889 | TotalAmt |
| Management And General | $48,889 | ManagementAndGeneralAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $373,751 | TotalAmt |
| Program Services | $373,751 | ProgramServicesAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $468,079 | TotalAmt |
| Program Services | $171,405 | ProgramServicesAmt |
| Management And General | $87,068 | ManagementAndGeneralAmt |
| Fundraising | $209,606 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $456,801 | TotalAmt |
| Program Services | $119,530 | ProgramServicesAmt |
| Management And General | $227,441 | ManagementAndGeneralAmt |
| Fundraising | $109,830 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $521,385 | TotalAmt |
| Program Services | $217,275 | ProgramServicesAmt |
| Management And General | $245,066 | ManagementAndGeneralAmt |
| Fundraising | $59,044 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,954 | TotalAmt |
| Program Services | $4,943 | ProgramServicesAmt |
| Management And General | $11 | ManagementAndGeneralAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $397,032 | TotalAmt |
| Program Services | $318,205 | ProgramServicesAmt |
| Management And General | $19,738 | ManagementAndGeneralAmt |
| Fundraising | $59,089 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $486,500 | TotalAmt |
| Program Services | $451,727 | ProgramServicesAmt |
| Management And General | $19,263 | ManagementAndGeneralAmt |
| Fundraising | $15,510 | FundraisingAmt |
Other Expenses OtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | MISCELLANEOUS | Desc |
| Total | $562,754 | TotalAmt |
| Program Services | $322,869 | ProgramServicesAmt |
| Management And General | $131,658 | ManagementAndGeneralAmt |
| Fundraising | $108,227 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $52,712,119 | TotalAmt |
| Program Services | $48,023,113 | ProgramServicesAmt |
| Management And General | $2,846,496 | ManagementAndGeneralAmt |
| Fundraising | $1,842,510 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,468,342 | BOYAmt |
| EOY | $3,706,301 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $45,239,712 | BOYAmt |
| EOY | $20,005,811 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $11,775,250 | BOYAmt |
| EOY | $1,358,053 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $353,136 | BOYAmt |
| EOY | $368,116 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $4,575,645 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $3,259,040 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,487,761 | BOYAmt |
| EOY | $1,316,605 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $136,831 | BOYAmt |
| EOY | $25,721,504 | EOYAmt |
Intangible Assets IntangibleAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $189,191 | BOYAmt |
| EOY | $109,919 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $100,873 | BOYAmt |
| EOY | $188,231 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $61,751,096 | BOYAmt |
| EOY | $52,774,540 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $921,186 | BOYAmt |
| EOY | $1,250,334 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $746,474 | BOYAmt |
| EOY | $1,363,220 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $223,059 | BOYAmt |
| EOY | $248,181 | EOYAmt |
Mortg Notes Pybl Scrd Invst Prop MortgNotesPyblScrdInvstPropGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $304,223 | BOYAmt |
| EOY | $236,759 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $136,831 | BOYAmt |
| EOY | $108,394 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,331,773 | BOYAmt |
| EOY | $3,206,888 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,041,320 | BOYAmt |
| EOY | $7,145,768 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $54,378,003 | BOYAmt |
| EOY | $42,421,884 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $59,419,323 | BOYAmt |
| EOY | $49,567,652 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $61,751,096 | BOYAmt |
| EOY | $52,774,540 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$9,868,759 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $17,088 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Info In Schedule O Part XII | Yes (X) | InfoInScheduleOPartXIIInd |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Separate Basis Fincl Stmt | Yes (X) | SeparateBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $37,862,150 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $48,281,104 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $42,070,943 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $43,644,020 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $36,711,628 | CurrentTaxYearAmt |
| Total | $208,569,845 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $37,862,150 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $48,281,104 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $42,070,943 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $43,644,020 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $36,711,628 | CurrentTaxYearAmt |
| Total | $208,569,845 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $120,962,317 | SubstantialContributorsTotAmt |
| Public Support Total170 | $87,607,528 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $418,492 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $21,741 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $145,033 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $595,629 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $517,289 | CurrentTaxYearAmt |
| Total | $1,698,184 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $210,268,029 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $27,800,348 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.41660 | PublicSupportCY170Pct |
| Public Support PY170 | 0.39960 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule C IRS990ScheduleC
Total Grassroots Lobbying TotalGrassrootsLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $120,306 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $253,445 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $373,751 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $52,299,708 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $52,673,459 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $1,000,000 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $250,000 | FilingOrganizationsTotalAmt |
Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus1 | $1,000,000 | CurrentYearMinus1Amt |
| Current Year | $1,000,000 | CurrentYearAmt |
| Total | $2,000,000 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $3,000,000 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus1 | $337,761 | CurrentYearMinus1Amt |
| Current Year | $373,751 | CurrentYearAmt |
| Total | $711,512 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus1 | $250,000 | CurrentYearMinus1Amt |
| Current Year | $250,000 | CurrentYearAmt |
| Total | $500,000 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $750,000 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus1 | $12,666 | CurrentYearMinus1Amt |
| Current Year | $120,306 | CurrentYearAmt |
| Total | $132,972 | TotalAmt |
Schedule D IRS990ScheduleD
CY Endwmt Fund CYEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $0 | BeginningYearBalanceAmt |
| Contributions | $200,000 | ContributionsAmt |
| End Year Balance | $200,000 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Prmnnt Endowment Balance EOY | 1.00000 | PrmnntEndowmentBalanceEOYPct |
| Endowments Held Unrelated Org | 0 | EndowmentsHeldUnrelatedOrgInd |
| Endowments Held Related Org | 0 | EndowmentsHeldRelatedOrgInd |
Land LandGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $505,203 | OtherCostOrOtherBasisAmt |
| Book Value | $505,203 | BookValueAmt |
Buildings BuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $857,182 | OtherCostOrOtherBasisAmt |
| Depreciation | $612,814 | DepreciationAmt |
| Book Value | $244,368 | BookValueAmt |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $31,731 | OtherCostOrOtherBasisAmt |
| Depreciation | $24,440 | DepreciationAmt |
| Book Value | $7,291 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $3,181,529 | OtherCostOrOtherBasisAmt |
| Depreciation | $2,621,786 | DepreciationAmt |
| Book Value | $559,743 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $1,316,605 | TotalBookValueLandBuildingsAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | DEFERRED COMPENSATION | Desc |
| Amt | $108,394 | Amt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $108,394 | TotalLiabilityAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $42,936,788 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $17,088 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $115,000 | DonatedServicesAndUseFcltsAmt |
| Revenue Not Reported | $132,088 | RevenueNotReportedAmt |
| Revenue Subtotal | $42,804,700 | RevenueSubtotalAmt |
| Investment Expenses Not Incld | $38,660 | InvestmentExpensesNotIncldAmt |
| Revenue Not Reported Fincl Stmt | $38,660 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $42,843,360 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $52,788,459 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $115,000 | DonatedServicesUseFcltsAmt |
| Expenses Not Reported | $115,000 | ExpensesNotReportedAmt |
| Expenses Subtotal | $52,673,459 | ExpensesSubtotalAmt |
| Investment Expenses Not Incld2 | $38,660 | InvestmentExpensesNotIncld2Amt |
| Expenses Not Rpt Fincl Stmt | $38,660 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $52,712,119 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| 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, 2020. NORD'S INFORMATION RETURNS ARE SUBJECT TO EXAMINATION BY THE FEDERAL AND STATE JURISDICTIONS. |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | 0 | GrantRecordsMaintainedInd |
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continuation Total Office | 0 | ContinuationTotalOfficeCnt |
| Continuation Total Employee | 0 | ContinuationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $0 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $0 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | EUROPE (INCLUDING ICELAND & GREENLAND) | RegionTxt |
| Purpose Of Grant | IAMRARE REGISTRY DESIGN CONCEPTS | PurposeOfGrantTxt |
| Cash Grant | $28,764 | CashGrantAmt |
| Valuation Method Used | BOOK | ValuationMethodUsedDesc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Org | 1 | TotalOtherOrgCnt |
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART III ACCOUNTING METHOD: | FormAndLineReferenceDesc |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (14 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|
| REGENTS OF THE UNIVERSITY OF CALIFORNIA | ||||||
| PO BOX 743315 | LOS ANGELES | CA | 900743315 | 956006143 | $35,487 | RESEARCH GRANT |
| UNITED MSD FOUNDATION INC | ||||||
| 7600 LAKERIDGE SRIVE | OCEAN SPRINGS | MS | 39564 | 813669443 | $5,050 | MEMBERSHIP COVID-19 GRANT |
| CHAMP1 RESEARCH FOUNDATION | ||||||
| 1367 WHITE WOOD AVE | SPRING HILLFL | FL | 34609 | 830516268 | $5,090 | MEMBERSHIP COVID-19 GRANT |
| GBSCIDP FOUNDATION | ||||||
| 375 E ELM STREET SUITE 101 | CONSHOHOCKEN | PA | 19428 | 222474769 | $6,000 | MEMBERSHIP COVID-19 GRANT |
| HISTIOCYTOSIS ASSOCIATION | ||||||
| 332 N BROADWAY | PITMAN | NJ | 08071 | 222827069 | $6,773 | MEMBERSHIP COVID-19 GRANT |
| UNITED MSD FOUNDATION INC | ||||||
| 7600 LAKERIDGE SRIVE | OCEAN SPRINGS | MS | 39564 | 813669443 | $8,600 | MEMBERSHIP COVID-19 GRANT |
| NATIONAL PKU ALLIANCE | ||||||
| 2809 E HAMILTON AVE 311 | EAU CLAIRE | WI | 54701 | 262849140 | $8,718 | MEMBERSHIP COVID-19 GRANT |
| TATTON BROWN RAHMAN SYNDROME COMMUNITY | ||||||
| 122 HUNNS LAKE ROAD | STANFORDVILLE | NY | 12581 | 812216511 | $9,000 | MEMBERSHIP COVID-19 GRANT |
| THE CUTE SYNDROME FOUNDATION INC | ||||||
| 1 MEADOWBROOK LANE | TROY | NY | 12180 | 462669906 | $9,346 | MEMBERSHIP COVID-19 GRANT |
| CHAMP1 RESEARCH FOUNDATION | ||||||
| 1367 WHITE WOOD AVE | SPRING HILLFL | FL | 34609 | 830516268 | $9,800 | MEMBERSHIP COVID-19 GRANT |
| THE GLOBAL FOUNDATION FOR PEROXISONAL DISORDERS | ||||||
| PO BOX 33238 | TULSA | OK | 74153 | 273646193 | $10,900 | MEMBERSHIP COVID-19 GRANT |
| FRIEDRICK'S ATAXIA RESEARCH ALLIANCE | ||||||
| 533 W UWCHLAN AVE SUITE 200 | DOWNINGTON | PA | 19335 | 522122720 | $13,000 | MEMBERSHIP COVID-19 GRANT |
| LIFE RAFT GROUP | ||||||
| 155 US HWY 46 WEST STE202 | WAYNE | NJ | 07470 | 820547746 | $14,500 | MEMBERSHIP COVID-19 GRANT |
| CURE CMD | ||||||
| 3217 EAST CARSON STREET 1014 | LAKEWOOD | CA | 90712 | 262640975 | $14,973 | MEMBERSHIP COVID-19 GRANT |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 12 | Total501c3OrgCnt |
Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Type | PATIENT ASSISTANCE PROGRAMS | GrantTypeTxt |
| Recipient | 9741 | RecipientCnt |
| Cash Grant | $40,100,980 | CashGrantAmt |
| Valuation Method Used | BOOK | ValuationMethodUsedDesc |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | ANY GRANTS AND SUPPORT GIVEN ARE CLOSELY MONITORED VIA REVIEW OF BACKUP DOCUMENTATION AND PROOF OF EXPENSE. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Written Employment Contract | Yes (X) | WrittenEmploymentContractInd |
| Compensation Survey | Yes (X) | CompensationSurveyInd |
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | 0 | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | 0 | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | 0 | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | 0 | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (8 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt | Bonus Filing OrganizationBonusFilingOrganizationAmount | Bonus Related OrganizationsBonusRelatedOrganizationsAmt | Other Compensation Filing OrgOtherCompensationFilingOrgAmt | Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt | Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt | Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt | Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt | Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt | Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| PETER SALTONSTALL | ||||||||||||||
| PRESIDENT/CEO | $505,828 | $0 | $0 | $0 | $0 | $0 | $14,250 | $0 | $8,636 | $0 | $528,714 | $0 | $0 | $0 |
| PAMELA GAVIN | ||||||||||||||
| CHIEF OPERATING OFFICER | $329,943 | $0 | $0 | $0 | $0 | $0 | $14,250 | $0 | $9,871 | $0 | $354,064 | $0 | $0 | $0 |
| RACHEL SHER | ||||||||||||||
| VP POLICY & REGULATORY AFFAIRS | $225,539 | $0 | $0 | $0 | $0 | $0 | $11,272 | $0 | $1,272 | $0 | $238,083 | $0 | $0 | $0 |
| PRASHANT GOEL | ||||||||||||||
| VP INFORMATION TECHNOLOGY | $225,269 | $0 | $0 | $0 | $0 | $0 | $9,615 | $0 | $1,162 | $0 | $236,046 | $0 | $0 | $0 |
| ALEXA MOORE | ||||||||||||||
| VP OF DEVELOPMENT | $215,094 | $0 | $0 | $0 | $0 | $0 | $11,202 | $0 | $28,226 | $0 | $254,522 | $0 | $0 | $0 |
| TIM EHRHARD | ||||||||||||||
| DIRECTOR OF IT | $161,533 | $0 | $0 | $0 | $0 | $0 | $8,557 | $0 | $28,195 | $0 | $198,285 | $0 | $0 | $0 |
| JILL POLLANDER | ||||||||||||||
| DIRECTOR OF PATIENT SERVICES | $132,058 | $0 | $0 | $0 | $0 | $0 | $7,010 | $0 | $18,880 | $0 | $157,948 | $0 | $0 | $0 |
| VINCENT J MURPHY JR | ||||||||||||||
| VP FINANCE | $129,386 | $0 | $0 | $0 | $0 | $0 | $7,085 | $0 | $28,134 | $0 | $164,605 | $0 | $0 | $0 |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 3 | FormAndLineReferenceDesc |
| Explanation | THE 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 ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART VI, SECTION B, LINE 11B | THE 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 12C | THE 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 15 | THE 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 19 | GOVERNING 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. |