BETA

HAYSTACK PROJECT INC: Form 990, tax year 2020

View the entire original 990 at ProPublica ↗

Organization
HAYSTACK PROJECT INC (EIN 83-3367375)
Tax period
2020-01-01 to 2020-12-31
Filed
2021-07-06
IRS object ID
202141879349300804
Schema version
2020v4.0
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)
Return2021-07-06T08:46:22-05:00ReturnTs
Tax Period End2020-12-31TaxPeriodEndDt

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 Begin2020-01-01TaxPeriodBeginDt

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
Phone3013206872PhoneNum

US Address USAddress

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

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonJAMES CAROPersonNm
Person TitlePRESIDENTPersonTitleTxt
Phone3013206872PhoneNum
Signature2021-05-25SignatureDt
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
Preparation2021-07-06PreparationDt
FieldValueIRS element (for citing)
Tax2020TaxYr
Build TS2022-09-23 18:48:47ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerJAMES CAROPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1541 POWELL STREETAddressLine1Txt
CityANNAPOLISCityNm
State AbbreviationMDStateAbbreviationCd
ZIP21401ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$391,539GrossReceiptsAmt
Group Return For AffiliatesfalseGroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.HAYSTACKPROJECT.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2019FormationYr
Legal Domicile StateMDLegalDomicileStateCd
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 Body5VotingMembersGoverningBodyCnt
Voting Members Independent5VotingMembersIndependentCnt
Total Employee0TotalEmployeeCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$905PYContributionsGrantsAmt
CY Contributions Grants$145,539CYContributionsGrantsAmt
PY Program Service Revenue$92,800PYProgramServiceRevenueAmt
CY Program Service Revenue$246,000CYProgramServiceRevenueAmt
CY Investment Income$0CYInvestmentIncomeAmt
PY Other Revenue$1,025PYOtherRevenueAmt
CY Other Revenue$0CYOtherRevenueAmt
PY Total Revenue$94,730PYTotalRevenueAmt
CY Total Revenue$391,539CYTotalRevenueAmt
CY Grants And Similar Paid$0CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
CY Salaries Comp Emp Bnft Paid$0CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$0CYTotalFundraisingExpenseAmt
PY Other Expenses$90,493PYOtherExpensesAmt
CY Other Expenses$227,161CYOtherExpensesAmt
PY Total Expenses$90,493PYTotalExpensesAmt
CY Total Expenses$227,161CYTotalExpensesAmt
PY Revenues Less Expenses$4,237PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$164,378CYRevenuesLessExpensesAmt
Total Assets BOY$4,237TotalAssetsBOYAmt
Total Assets EOY$168,615TotalAssetsEOYAmt
Total Liabilities EOY$0TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$4,237NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$168,615NetAssetsOrFundBalancesEOYAmt
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 AND THEIR TREATMENTSMissionDesc
Significant New Program SrvcfalseSignificantNewProgramSrvcInd
Significant ChangefalseSignificantChangeInd
Expense$67,500ExpenseAmt
Revenue$391,000RevenueAmt
DescENGAGED A THIRD PARTY PUBLIC POLICY CONSULTANT TO PROVIDE MONTHLY & AD HOC CALLS WITH PATIENT GROUPS. CALLS WERE FOCUSED ON IDENTIFYING ISSUES RELATED TO SYSTEMATIC BARRIERS TO ACCESS AND TREATMENTS. CONSULTANT PROVIDED GROUPS WITH GUIDANCE ON THE RULES, REGULATIONS, AND LAWS THAT IMPACT PATIENTS' CARE INCLUDING PROPOSALS CURRENTLY PENDING BY POLICY MAKERS. CONSULTANT HELPED COLLECT, COLLATE, AND COMPARTMENTALIZE WHICH PATIENT EXPERIENCES RELATED BACK TO WHICH CURRENT AND PENDING LAWS, 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 WORKING GROUPS SPECIFICALLY TAILORED TO ADDRESS THE NEEDS AND CONCERNS OF MINORITIES (HEAT) AND RARE CANCER PATIENTS (RCPC).Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$67,500ExpenseAmt
DescTHE ORGANIZATION HIRED A CONSULTING FIRM TO DRAFT A SERIES OF REPORTS ON PATIENT ORIENTED VALUE, WHICH GIVES HEALTH CARE 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 USE THEM TO MAGNIFY THEIR VOICES.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$73,295ExpenseAmt
DescENGAGED A PROFESSIONAL CONSULTING FIRM TO DRAFT SEVEN COMMENT LETTERS IN RESPONSE TO FEDERAL AGENCY PROPOSALS WHICH IMPACTED RESEARCH, DEVELOPMENT, AND PATIENT ACCESS TO TREATMENTS CRITICAL TO RARE AND ULTRA RARE CONDITIONS.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$208,295TotalProgramServiceExpensesAmt
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 Members5GoverningBodyVotingMembersCnt
Independent Voting Member5IndependentVotingMemberCnt
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 BodyYes (true)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (true)MinutesOfCommitteesInd
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 EnfrcYes (true)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (true)WhistleblowerPolicyInd
Document Retention PolicyfalseDocumentRetentionPolicyInd
Compensation Process CEOfalseCompensationProcessCEOInd
Compensation Process OtherfalseCompensationProcessOtherInd
Investment In Joint VenturefalseInvestmentInJointVentureInd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
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)
Phone3013206872PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line16005 GLOSTER ROADAddressLine1Txt
CityBETHESDACityNm
State AbbreviationMDStateAbbreviationCd
ZIP20816ZIPCd
FieldValueIRS element (for citing)
No Listed Persons CompensatedYes (X)NoListedPersonsCompensatedInd

Form990 Part VII Section A Form990PartVIISectionAGrp (5 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmt
JAMES CARO
PRESIDENT1.00Yes (X)Yes (X)$0$0$0
JOSEPH CHIRICO
TREASURER3.00Yes (X)Yes (X)$0$0$0
CHRISTINA NYQUIST
DIRECTOR0.50Yes (X)Yes (X)$0$0$0
BELA SASTRY
SECRETARY1.00Yes (X)Yes (X)$0$0$0
MARC YALE
DIRECTOR0.50Yes (X)Yes (X)$0$0$0
FieldValueIRS element (for citing)
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KfalseTotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd
All Other Contributions$145,539AllOtherContributionsAmt
Total Contributions$145,539TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (3 entries)

DescDescTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
PROGRAMATIC REPORTING$145,140$145,140
STAKEHOLDERS EDUCATION$59,040$59,040
PATIENT GROUP NETWORKING$41,820$41,820
FieldValueIRS element (for citing)
Total Program Service Revenue$246,000TotalProgramServiceRevenueAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$391,539TotalRevenueColumnAmt
Related Or Exempt Func Income$246,000RelatedOrExemptFuncIncomeAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$94,127TotalAmt
Program Services$80,000ProgramServicesAmt
Management And General$14,127ManagementAndGeneralAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$400TotalAmt
Management And General$400ManagementAndGeneralAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$10,000TotalAmt
Program Services$10,000ProgramServicesAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$1,029TotalAmt
Program Services$500ProgramServicesAmt
Management And General$529ManagementAndGeneralAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$748TotalAmt
Management And General$748ManagementAndGeneralAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$2,270TotalAmt
Management And General$2,270ManagementAndGeneralAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$629TotalAmt
Management And General$629ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (2 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmt
OUTSOURCED CONSULTING$117,795$117,795
BANK CHARGES$163$163

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$227,161TotalAmt
Program Services$208,295ProgramServicesAmt
Management And General$18,866ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$4,237BOYAmt
EOY$168,615EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$4,237BOYAmt
EOY$168,615EOYAmt

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$4,237BOYAmt
EOY$168,615EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$4,237BOYAmt
EOY$168,615EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$4,237BOYAmt
EOY$168,615EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$164,378ReconcilationRevenueExpnssAmt
Method Of Accounting CashYes (X)MethodOfAccountingCashInd
Accountant Compile Or ReviewfalseAccountantCompileOrReviewInd
FS AuditedfalseFSAuditedInd
Federal Grant Audit RequiredfalseFederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

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

Gifts Grants Contris Rcvd509 GiftsGrantsContrisRcvd509Grp

FieldValueIRS element (for citing)
Current Tax Year$145,539CurrentTaxYearAmt
Total$145,539TotalAmt

Gross Receipts Admissions GrossReceiptsAdmissionsGrp

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

Total509 Total509Grp

FieldValueIRS element (for citing)
Current Tax Year$391,539CurrentTaxYearAmt
Total$391,539TotalAmt
FieldValueIRS element (for citing)
Public Support Total509$391,539PublicSupportTotal509Amt

Total Support Calendar Year TotalSupportCalendarYearGrp

FieldValueIRS element (for citing)
Current Tax Year$391,539CurrentTaxYearAmt
Total$391,539TotalAmt
FieldValueIRS element (for citing)
Public Support CY5091.00000PublicSupportCY509Pct
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 AND THEIR TREATMENTS
FORM 990, PAGE 2, PART III, LINE 4AENGAGED A THIRD PARTY PUBLIC POLICY CONSULTANT TO PROVIDE MONTHLY & AD HOC CALLS WITH PATIENT GROUPS. CALLS WERE FOCUSED ON IDENTIFYING ISSUES RELATED TO SYSTEMATIC BARRIERS TO ACCESS AND TREATMENTS. CONSULTANT PROVIDED GROUPS WITH GUIDANCE ON THE RULES, REGULATIONS, AND LAWS THAT IMPACT PATIENTS' CARE INCLUDING PROPOSALS CURRENTLY PENDING BY POLICY MAKERS. CONSULTANT HELPED COLLECT, COLLATE, AND COMPARTMENTALIZE WHICH PATIENT EXPERIENCES RELATED BACK TO WHICH CURRENT AND PENDING LAWS, 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 WORKING GROUPS SPECIFICALLY TAILORED TO ADDRESS THE NEEDS AND CONCERNS OF MINORITIES (HEAT) AND RARE CANCER PATIENTS (RCPC).
FORM 990, PAGE 6, PART VI, LINE 11BEACH MEMBER REVIEWS AND APPROVES FORM 990 BEFORE FILING.
FORM 990, PAGE 6, PART VI, LINE 12CDIRECTOR REVIEW AND APPROVE ANY CONFLICT OF INTEREST ISSUES.
FORM 990, PAGE 6, PART VI, LINE 19FORM 990 AVAILABLE FOR PUBLIC INSPECTION.

Comments

Anonymous: no account or email. Up to 2,000 characters, at most one link. Comments are checked automatically; some wait for review.