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HAYSTACK PROJECT INC: Form 990, tax year 2021

View the entire original 990 at ProPublica ↗

Organization
HAYSTACK PROJECT INC (EIN 83-3367375)
Tax period
2021-01-01 to 2021-12-31
Filed
2022-05-05
IRS object ID
202231259349301138
Schema version
2021v4.0
Source
Download XML · Original 990 at ProPublica

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

Return header ReturnHeader

FieldValueIRS element (for citing)
Return2022-05-05T11:05:37-05:00ReturnTs
Tax Period End2021-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN522136830PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1YAAKOV BORENSTEIN CPA PCBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line19505 LINDEN AVEAddressLine1Txt
CityBETHESDACityNm
State AbbreviationMDStateAbbreviationCd
ZIP208141638ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2021-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN833367375EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1HAYSTACK PROJECT INCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlHAYSBusinessNameControlTxt
Phone2023609985PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1640 9TH STREET SWAddressLine1Txt
CityWASHINGTONCityNm
State AbbreviationDCStateAbbreviationCd
ZIP20024ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonJAMES CAROPersonNm
Person TitleBOARD MEMBERPersonTitleTxt
Phone3013206872PhoneNum
Signature2022-05-05SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

FieldValueIRS element (for citing)
Person FirstJAMESPersonFirstNm
Person LastCAROPersonLastNm
FieldValueIRS element (for citing)
SSNXXX-XX-XXXXSSN

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonYAAKOV BORENSTEIN CPA PCPreparerPersonNm
PTINP00757261PTIN
Phone3015305870PhoneNum
Preparation2022-05-05PreparationDt
FieldValueIRS element (for citing)
Tax2021TaxYr
Build TS2022-09-23 18:48:47ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Address ChangeYes (X)AddressChangeInd
Principal OfficerDEANNA DARLINGTONPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1640 9TH STREET SWAddressLine1Txt
CityWASHINGTONCityNm
State AbbreviationDCStateAbbreviationCd
ZIP20024ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$482,707GrossReceiptsAmt
Group Return For AffiliatesfalseGroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.HAYSTACKPROJECT.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2019FormationYr
Legal Domicile StateDCLegalDomicileStateCd
Activity Or MissionHAYSTACK PROJECT BRINGS TOGETHER THE STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE CONDITIONS TO EDUCATE THEM AND ASSIST WITH THEIR SELF-ADVOCACY EFFORTSActivityOrMissionDesc
Voting Members Governing Body9VotingMembersGoverningBodyCnt
Voting Members Independent9VotingMembersIndependentCnt
Total Employee0TotalEmployeeCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$145,539PYContributionsGrantsAmt
CY Contributions Grants$482,707CYContributionsGrantsAmt
PY Program Service Revenue$246,000PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
CY Investment Income$0CYInvestmentIncomeAmt
CY Other Revenue$0CYOtherRevenueAmt
PY Total Revenue$391,539PYTotalRevenueAmt
CY Total Revenue$482,707CYTotalRevenueAmt
CY Grants And Similar Paid$250CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
CY Salaries Comp Emp Bnft Paid$3,000CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$0CYTotalFundraisingExpenseAmt
PY Other Expenses$227,161PYOtherExpensesAmt
CY Other Expenses$360,803CYOtherExpensesAmt
PY Total Expenses$227,161PYTotalExpensesAmt
CY Total Expenses$364,053CYTotalExpensesAmt
PY Revenues Less Expenses$164,378PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$118,654CYRevenuesLessExpensesAmt
Total Assets BOY$168,615TotalAssetsBOYAmt
Total Assets EOY$287,269TotalAssetsEOYAmt
Total Liabilities EOY$0TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$168,615NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$287,269NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionHAYSTACK PROJECT BRINGS TOGETHER THE STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE CONDITIONS TO EDUCATE AND ADVOCATE FOR PUBLIC POLICIES THAT RECOGNIZE THE UNIQUE CIRCUMSTANCES OF EXTREMELY RARE CONDITIONS, THEIR DIAGNOSIS, TREATMENT, AND CARE.MissionDesc
Significant New Program SrvcfalseSignificantNewProgramSrvcInd
Significant ChangefalseSignificantChangeInd
Expense$95,050ExpenseAmt
Grant$250GrantAmt
DescTHE ORGANIZATION HIRED CONSULTANTS TO DRAFT A SERIES OF REPORTS ON VALUE WHICH GIVES PROVIDERS DEEPER INSIGHTS INTO THE PATIENTS' PERSPECTIVES AND PERCEPTION OF VALUE. THIS PROVIDES PATIENTS WITH A WAY TO COME TOGETHER AND MAGNIFY THEIR VOICES SO THEY ARE BETTER HEARD BY GROUPS AND AUTHORITIES THAT MAKE COVERAGE DECISIONS AND FORMULARY DESIGNATIONS. THE ORGANIZATION MAINTAINS A LIBRARY OF THESE REPORTS SO THAT MEMBER ORGANIZATIONS CAN LEARN FROM THEM, CONDUCT THEIR OWN AND USE THEM TO MAGNIFY THEIR VOICES.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$118,200ExpenseAmt
Grant$118,200GrantAmt
DescENGAGE CONSULTANTS TO DRAFT COMMENT LETTERS IN RESPONSE TO FEDERAL AGENCY PROPOSALS WHICH IMPACT RESEARCH, DEVELOPMENT AND PATIENT ACCESS TO TREATMENTS CRITICAL TO RARE AND ULTRA RARE CONDITIONS.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$120,865ExpenseAmt
Grant$120,865GrantAmt
DescENGAGE THIRD PARTY CONSULTANTS TO PROVIDE MONTHLY AND AD HOC CALLS WITH PATIENTS GROUPS. CALLS WERE FOCUSED ON IDENTIFYING ISSUES RELATED TO SYSTEMIC BARRIERS TO ACCESS TO CARE AND TREATMENTS. CONSULTANTS PROVIDED GROUPS WITH GUIDANCE ON THE RULES, REGULATIONS, AND LAWS THAT IMPACT PATIENT CARE INCLUDING PROPOSALS CURRENTLY PENDING WITH POLICY MAKERS. CONSULTANTS HELPED COLLECT, COLLATE AND COMPARTMENTALIZE WHICH PATIENT EXPERIENCES RELATED BACK TO WHICH CURRENT AND PENDING LAW, REGULATIONS AND PROPOSALS. PATIENT GROUPS WERE PROVIDED A FORUM FROM WHICH THEY CAN LEARN FROM EACH OTHER. AS PART OF THIS EFFORT, THE ORGANIZATION HAS CREATED THE ADVOCACY EMPOWERMENT INSTITUTE (AEI). THE END GOAL OF AEI IS TO BETTER ARM PATIENTS FOR THE IMPORTANT ROLE OF SELF-ADVOCACY. THE ORGANIZATION HAS ALSO CREATED SPECIAL MEMBER FOCUSED PROGRAMS SPECIFICALLY TAILORED TO ADDRESS THE NEEDS AND CONCERNS OF PAYORS, MINORITIES, AND RARE CANCER PATIENTS. CONSULTANTS ALSO RESEARCH, MODERATE, AND SUMMARIZE A MONTHLY SPEAKER SERIES.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$334,115TotalProgramServiceExpensesAmt
Described In Section501c3Yes (true)DescribedInSection501c3Ind
Schedule B RequiredfalseScheduleBRequiredInd
Political Campaign ActyfalsePoliticalCampaignActyInd
Lobbying ActivitiesYes (true)LobbyingActivitiesInd
Subject To Proxy TaxfalseSubjectToProxyTaxInd
Donor Advised FundfalseDonorAdvisedFundInd
Conservation EasementsfalseConservationEasementsInd
Collections Of ArtfalseCollectionsOfArtInd
Credit CounselingfalseCreditCounselingInd
Donor Rstr Or Quasi EndowmentsfalseDonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentfalseReportLandBuildingEquipmentInd
Report Investments Other SecfalseReportInvestmentsOtherSecInd
Report Program Related InvstfalseReportProgramRelatedInvstInd
Report Other AssetsfalseReportOtherAssetsInd
Report Other LiabilitiesfalseReportOtherLiabilitiesInd
Include FIN48 FootnotefalseIncludeFIN48FootnoteInd
Independent Audit Fincl StmtfalseIndependentAuditFinclStmtInd
Consolidated Audit Fincl StmtfalseConsolidatedAuditFinclStmtInd
School OperatingfalseSchoolOperatingInd
Foreign OfficefalseForeignOfficeInd
Foreign ActivitiesfalseForeignActivitiesInd
More Than5000 K To OrgfalseMoreThan5000KToOrgInd
More Than5000 K To IndividualsfalseMoreThan5000KToIndividualsInd
Professional FundraisingfalseProfessionalFundraisingInd
Fundraising ActivitiesfalseFundraisingActivitiesInd
Gaming ActivitiesfalseGamingActivitiesInd
Operate HospitalfalseOperateHospitalInd
Grants To OrganizationsfalseGrantsToOrganizationsInd
Grants To IndividualsfalseGrantsToIndividualsInd
Schedule J RequiredfalseScheduleJRequiredInd
Tax Exempt BondsfalseTaxExemptBondsInd
Engaged In Excess Benefit TransfalseEngagedInExcessBenefitTransInd
PY Excess Benefit TransfalsePYExcessBenefitTransInd
Loan OutstandingfalseLoanOutstandingInd
Grant To Related PersonfalseGrantToRelatedPersonInd
Business Rln With Org MemfalseBusinessRlnWithOrgMemInd
Business Rln With Fam MemfalseBusinessRlnWithFamMemInd
Business Rln With35 Ctrl EntfalseBusinessRlnWith35CtrlEntInd
Deductible Non Cash ContrifalseDeductibleNonCashContriInd
Deductible Art ContributionfalseDeductibleArtContributionInd
Terminate OperationsfalseTerminateOperationsInd
Partial LiquidationfalsePartialLiquidationInd
Disregarded EntityfalseDisregardedEntityInd
Related EntityfalseRelatedEntityInd
Related Organization Ctrl EntfalseRelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd OrgfalseTrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted PrtshpfalseActivitiesConductedPrtshpInd
Schedule O RequiredYes (true)ScheduleORequiredInd
IRP Document0IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Employee0EmployeeCnt
Unrelated Bus Incm Over LimitfalseUnrelatedBusIncmOverLimitInd
Foreign Financial AccountfalseForeignFinancialAccountInd
Prohibited Tax Shelter TransfalseProhibitedTaxShelterTransInd
Taxable Party NotificationfalseTaxablePartyNotificationInd
Nondeductible ContributionsfalseNondeductibleContributionsInd
Indoor Tanning ServicesfalseIndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht PymtfalseSubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst IncfalseSubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members9GoverningBodyVotingMembersCnt
Independent Voting Member9IndependentVotingMemberCnt
Family Or Business RlnfalseFamilyOrBusinessRlnInd
Delegation Of Mgmt DutiesfalseDelegationOfMgmtDutiesInd
Change To Org DocumentsfalseChangeToOrgDocumentsInd
Material Diversion Or MisusefalseMaterialDiversionOrMisuseInd
Members Or StockholdersfalseMembersOrStockholdersInd
Election Of Board MembersfalseElectionOfBoardMembersInd
Decisions Subject To ApprovafalseDecisionsSubjectToApprovaInd
Minutes Of Governing BodyfalseMinutesOfGoverningBodyInd
Officer Mailing AddressfalseOfficerMailingAddressInd
Local ChaptersfalseLocalChaptersInd
Form990 Provided To Gvrn BodyYes (true)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (true)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (true)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcfalseRegularMonitoringEnfrcInd
Whistleblower PolicyYes (true)WhistleblowerPolicyInd
Document Retention PolicyfalseDocumentRetentionPolicyInd
Compensation Process CEOYes (true)CompensationProcessCEOInd
Compensation Process OtherfalseCompensationProcessOtherInd
Investment In Joint VenturefalseInvestmentInJointVentureInd
States Where Copy Of Return Is FldDCStatesWhereCopyOfReturnIsFldCd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1JOSEPH CHIRICOBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone7034721163PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line16005 GLOSTER ROADAddressLine1Txt
CityBETHESDACityNm
State AbbreviationMDStateAbbreviationCd
ZIP20816ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (9 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorInd
DEANNA DARLINGTON
CEO5.00Yes (X)$3,000$0$0
JAMES CARO
BOARD MEMBER0.50$0$0$0Yes (X)
CHRISTINA NYQUIST
BOARD MEMBER0.50$0$0$0Yes (X)
LISA SHEELMAN
BOARD MEMBER0.50$0$0$0Yes (X)
SUSAN THORNTON
BOARD MEMBER0.50$0$0$0Yes (X)
CHEVISE TURNER
BOARD MEMBER0.50$0$0$0Yes (X)
MARC YALE
BOARD MEMBER0.50$0$0$0Yes (X)
JOSEPH CHIRICO
TREASURER0.50Yes (X)$0$0$0
BELA SASTRY
SECRETARY0.50Yes (X)$0$0$0
FieldValueIRS element (for citing)
Total Reportable Comp From Org$3,000TotalReportableCompFromOrgAmt
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KfalseTotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp

Contractor Name ContractorName

FieldValueIRS element (for citing)
PersonM KAY SCANLONPersonNm

Contractor Address ContractorAddress

US Address USAddress

FieldValueIRS element (for citing)
Address Line11401 PORTER ST 418AddressLine1Txt
CityBALTIMORECityNm
State AbbreviationMDStateAbbreviationCd
ZIP21230ZIPCd
FieldValueIRS element (for citing)
ServicesCONSULTINGServicesDesc
Compensation$142,960CompensationAmt
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K1CntrctRcvdGreaterThan100KCnt
Membership Dues$4,127MembershipDuesAmt
All Other Contributions$478,580AllOtherContributionsAmt
Total Contributions$482,707TotalContributionsAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$482,707TotalRevenueColumnAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$250TotalAmt
Program Services$250ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$3,000TotalAmt
Management And General$3,000ManagementAndGeneralAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$110,745TotalAmt
Program Services$90,000ProgramServicesAmt
Management And General$20,745ManagementAndGeneralAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$300TotalAmt
Management And General$300ManagementAndGeneralAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$20,000TotalAmt
Program Services$20,000ProgramServicesAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$1,663TotalAmt
Program Services$600ProgramServicesAmt
Management And General$1,063ManagementAndGeneralAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$2,859TotalAmt
Management And General$2,859ManagementAndGeneralAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$1,600TotalAmt
Management And General$1,600ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (2 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmt
OUTSOURCED CONSULTING$223,265$223,265
BANK CHARGES$371$371

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$364,053TotalAmt
Program Services$334,115ProgramServicesAmt
Management And General$29,938ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$168,615BOYAmt
EOY$287,269EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$168,615BOYAmt
EOY$287,269EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt
FieldValueIRS element (for citing)
Org Does Not Follow FASB117Yes (X)OrgDoesNotFollowFASB117Ind

Rtn Earn Endowment Incm Oth Fnds RtnEarnEndowmentIncmOthFndsGrp

FieldValueIRS element (for citing)
BOY$168,615BOYAmt
EOY$287,269EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$168,615BOYAmt
EOY$287,269EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$168,615BOYAmt
EOY$287,269EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$118,654ReconcilationRevenueExpnssAmt
Method Of Accounting CashYes (X)MethodOfAccountingCashInd
Accountant Compile Or ReviewfalseAccountantCompileOrReviewInd
FS AuditedfalseFSAuditedInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Publicly Supported Org509a2Yes (X)PubliclySupportedOrg509a2Ind

Gifts Grants Contris Rcvd509 GiftsGrantsContrisRcvd509Grp

FieldValueIRS element (for citing)
Current Tax Year Minus1 Year$145,539CurrentTaxYearMinus1YearAmt
Current Tax Year$482,707CurrentTaxYearAmt
Total$628,246TotalAmt

Gross Receipts Admissions GrossReceiptsAdmissionsGrp

FieldValueIRS element (for citing)
Current Tax Year Minus1 Year$246,000CurrentTaxYearMinus1YearAmt
Total$246,000TotalAmt

Total509 Total509Grp

FieldValueIRS element (for citing)
Current Tax Year Minus1 Year$391,539CurrentTaxYearMinus1YearAmt
Current Tax Year$482,707CurrentTaxYearAmt
Total$874,246TotalAmt
FieldValueIRS element (for citing)
Public Support Total509$874,246PublicSupportTotal509Amt

Total Support Calendar Year TotalSupportCalendarYearGrp

FieldValueIRS element (for citing)
Current Tax Year Minus1 Year$391,539CurrentTaxYearMinus1YearAmt
Current Tax Year$482,707CurrentTaxYearAmt
Total$874,246TotalAmt
FieldValueIRS element (for citing)
Public Support CY5091.00000PublicSupportCY509Pct
Public Support PY5091.00000PublicSupportPY509Pct
Investment Income CY0.00000InvestmentIncomeCYPct
Investment Income PY0.00000InvestmentIncomePYPct
Thirty Thr Pct Suprt Tests CY509Yes (X)ThirtyThrPctSuprtTestsCY509Ind

Schedule C IRS990ScheduleC

FieldValueIRS element (for citing)
VolunteersfalseVolunteersInd
Paid Staff Or ManagementfalsePaidStaffOrManagementInd
Media AdvertisementsfalseMediaAdvertisementsInd
Mailings MembersfalseMailingsMembersInd
Publications Or BroadcastfalsePublicationsOrBroadcastInd
Grants Other OrganizationsfalseGrantsOtherOrganizationsInd
Direct Contact LegislatorsfalseDirectContactLegislatorsInd
Rallies DemonstrationsfalseRalliesDemonstrationsInd
Other ActivitiesfalseOtherActivitiesInd
Not Described Section501c3falseNotDescribedSection501c3Ind

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (5 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990 - ORGANIZATION'S MISSIONHAYSTACK PROJECT BRINGS TOGETHER THE STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE CONDITIONS TO EDUCATE AND ADVOCATE FOR PUBLIC POLICIES THAT RECOGNIZE THE UNIQUE CIRCUMSTANCES OF EXTREMELY RARE CONDITIONS, THEIR DIAGNOSIS, TREATMENT, AND CARE.
FORM 990, PAGE 2, PART III, LINE 4CENGAGE THIRD PARTY CONSULTANTS TO PROVIDE MONTHLY AND AD HOC CALLS WITH PATIENTS GROUPS. CALLS WERE FOCUSED ON IDENTIFYING ISSUES RELATED TO SYSTEMIC BARRIERS TO ACCESS TO CARE AND TREATMENTS. CONSULTANTS PROVIDED GROUPS WITH GUIDANCE ON THE RULES, REGULATIONS, AND LAWS THAT IMPACT PATIENT CARE INCLUDING PROPOSALS CURRENTLY PENDING WITH POLICY MAKERS. CONSULTANTS HELPED COLLECT, COLLATE AND COMPARTMENTALIZE WHICH PATIENT EXPERIENCES RELATED BACK TO WHICH CURRENT AND PENDING LAW, REGULATIONS AND PROPOSALS. PATIENT GROUPS WERE PROVIDED A FORUM FROM WHICH THEY CAN LEARN FROM EACH OTHER. AS PART OF THIS EFFORT, THE ORGANIZATION HAS CREATED THE ADVOCACY EMPOWERMENT INSTITUTE (AEI). THE END GOAL OF AEI IS TO BETTER ARM PATIENTS FOR THE IMPORTANT ROLE OF SELF-ADVOCACY. THE ORGANIZATION HAS ALSO CREATED SPECIAL MEMBER FOCUSED PROGRAMS SPECIFICALLY TAILORED TO ADDRESS THE NEEDS AND CONCERNS OF PAYORS, MINORITIES, AND RARE CANCER PATIENTS. CONSULTANTS ALSO RESEARCH, MODERATE, AND SUMMARIZE A MONTHLY SPEAKER SERIES.
FORM 990, PAGE 6, PART VI, LINE 11BEACH MEMBER REVIEWS AND APPROVES FORM 990 BEFORE FILING.
FORM 990, PAGE 6, PART VI, LINE 15AAPPROVED BY BOARD OF DIRECTORS.
FORM 990, PAGE 6, PART VI, LINE 19FORM 990 AVAILABLE FOR PUBLIC INSPECTION.

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