HAYSTACK PROJECT INC: Form 990, tax year 2025
View the entire original 990 at ProPublica ↗
- Organization
- HAYSTACK PROJECT INC (EIN 83-3367375)
- Tax period
- 2025-01-01 to 2025-12-31
- Filed
- 2026-08-20
- IRS object ID
- 202632329349300118
- Schema version
- 2025v4.0
- 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2026-08-20T10:44:34-04:00 | ReturnTs |
| Tax Period End | 2025-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 843085028 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | FOUNDATION GROUP INC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 7021 UNIVERSITY BLVD | AddressLine1Txt |
| City | WINTER PARK | CityNm |
| State Abbreviation | FL | StateAbbreviationCd |
| ZIP | 327926719 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2025-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 833367375 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | HAYSTACK PROJECT INC | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | HAYS | BusinessNameControlTxt |
| Phone | 6143546036 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 637 EMERSON PLACE | AddressLine1Txt |
| City | SEVERNA PARK | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 21146 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | KARA BERASI | PersonNm |
| Person Title | CEO | PersonTitleTxt |
| Phone | 6143546036 | PhoneNum |
| Signature | 2026-08-19 | SignatureDt |
| Discuss With Paid Preparer | Yes (true) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | ANDREW D PAYNE EA | PreparerPersonNm |
| PTIN | P02188892 | PTIN |
| Phone | 8778579002 | PhoneNum |
| Preparation | 2026-08-20 | PreparationDt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2025 | TaxYr |
| Build TS | 2025-03-06 01:10:19Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | KARA BERASI | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 637 EMERSON PLACE | AddressLine1Txt |
| City | SEVERNA PARK | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 21146 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $448,047 | GrossReceiptsAmt |
| Group Return For Affiliates | false | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.HAYSTACKPROJECT.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2019 | FormationYr |
| Legal Domicile State | MD | LegalDomicileStateCd |
| Activity Or Mission | HAYSTACK PROJECT BRINGS TOGETHER STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE MEDICAL CONDITIONS TO EDUCATE THEM AND ASSIST THEM WITH THEIR SELF ADVOCACY EFFORTS. | ActivityOrMissionDesc |
| Voting Members Governing Body | 10 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 9 | VotingMembersIndependentCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Total Volunteers | 9 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| PY Contributions Grants | $759,000 | PYContributionsGrantsAmt |
| CY Contributions Grants | $448,047 | CYContributionsGrantsAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| CY Investment Income | $0 | CYInvestmentIncomeAmt |
| CY Other Revenue | $0 | CYOtherRevenueAmt |
| PY Total Revenue | $759,000 | PYTotalRevenueAmt |
| CY Total Revenue | $448,047 | CYTotalRevenueAmt |
| CY Grants And Similar Paid | $0 | CYGrantsAndSimilarPaidAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $36,000 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $36,000 | CYSalariesCompEmpBnftPaidAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $0 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $489,956 | PYOtherExpensesAmt |
| CY Other Expenses | $485,673 | CYOtherExpensesAmt |
| PY Total Expenses | $525,956 | PYTotalExpensesAmt |
| CY Total Expenses | $521,673 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $233,044 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$73,626 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $402,109 | TotalAssetsBOYAmt |
| Total Assets EOY | $328,483 | TotalAssetsEOYAmt |
| Total Liabilities EOY | $0 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $402,109 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $328,483 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | HAYSTACK PROJECT BRINGS TOGETHER STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE MEDICAL CONDITIONS TO EDUCATE THEM AND ASSIST THEM WITH THEIR SELF ADVOCACY EFFORTS. | MissionDesc |
| Significant New Program Srvc | false | SignificantNewProgramSrvcInd |
| Significant Change | false | SignificantChangeInd |
| Expense | $519,281 | ExpenseAmt |
| Desc | THE ORGANIZATION BRINGS TOGETHER PATIENT ORGANIZATIONS REPRESENTING PATIENTS SUFFERING FROM OR CARING FOR PATIENTS WITH EXTREMELY RARE DISEASES. THIS IS ACCOMPLISHED THROUGH EDUCATING POLICYMAKERS AND STAKEHOLDERS ABOUT THE BARRIERS FDA PROCESSES AND INSURANCE FRAMEWORKS CREATE AND PERPETUATE IN RARE AND ULTRA-RARE DISEASES AND HELP THEM RECOGNIZE THE CIRCUMSTANCES OF EXTREMELY RARE CONDITIONS AND TREATMENTS AND EXPAND INCENTIVES CRITICAL TO ENSURING THEY CAN REACH PATIENTS. POLICY INITIATIVES AND RARE DISEASE PRIORITIES: HAYSTACK PROJECT WORKS WITH PATIENTS TO HELP THEM LEARN HOW TO ADVOCATE FOR THEIR COMMUNITIES AND IMPROVE. MODERNIZATION OF RARE DISEASE CLINICAL TRIALS: WORK FOCUSED ON RETHINKING CLINICAL TRIALS FOR RARE DISEASES. PATIENT EDUCATION & ENGAGEMENT: SPEAKER SERIES WHERE WE BRING VARIOUS EXPERTS TO SPEAK TO ISSUES RELATED TO RARE DISEASES. MEMBER ORGANIZATIONS ARE ABLE TO LISTEN AND ASK QUESTIONS. ALSO CONDUCT MEMBER MEETINGS TO EDUCATE ABOUT CURRENT EVENTS, HAYSTACK INITIATIVES, AND HELP ANSWER QUESTIONS. | Desc |
| Total Program Service Expenses | $519,281 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (true) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (true) | ScheduleBRequiredInd |
| Political Campaign Acty | false | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (true) | LobbyingActivitiesInd |
| Subject To Proxy Tax | false | SubjectToProxyTaxInd |
| Donor Advised Fund | false | DonorAdvisedFundInd |
| Conservation Easements | false | ConservationEasementsInd |
| Collections Of Art | false | CollectionsOfArtInd |
| Credit Counseling | false | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | false | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | false | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | false | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | false | ReportProgramRelatedInvstInd |
| Report Other Assets | false | ReportOtherAssetsInd |
| Report Other Liabilities | false | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | false | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | false | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | false | ConsolidatedAuditFinclStmtInd |
| School Operating | false | SchoolOperatingInd |
| Foreign Office | false | ForeignOfficeInd |
| Foreign Activities | false | ForeignActivitiesInd |
| More Than5000 K To Org | false | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | false | MoreThan5000KToIndividualsInd |
| Professional Fundraising | false | ProfessionalFundraisingInd |
| Fundraising Activities | false | FundraisingActivitiesInd |
| Gaming Activities | false | GamingActivitiesInd |
| Operate Hospital | false | OperateHospitalInd |
| Grants To Organizations | false | GrantsToOrganizationsInd |
| Grants To Individuals | false | GrantsToIndividualsInd |
| Schedule J Required | false | ScheduleJRequiredInd |
| Tax Exempt Bonds | false | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | false | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | false | PYExcessBenefitTransInd |
| Loan Outstanding | false | LoanOutstandingInd |
| Grant To Related Person | false | GrantToRelatedPersonInd |
| Business Rln With Org Mem | false | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | false | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | Yes (true) | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | false | DeductibleNonCashContriInd |
| Deductible Art Contribution | false | DeductibleArtContributionInd |
| Terminate Operations | false | TerminateOperationsInd |
| Partial Liquidation | false | PartialLiquidationInd |
| Disregarded Entity | false | DisregardedEntityInd |
| Related Entity | false | RelatedEntityInd |
| Related Organization Ctrl Ent | false | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | false | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | false | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (true) | ScheduleORequiredInd |
| IRP Document | 5 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (true) | BackupWthldComplianceInd |
| Employee | 0 | EmployeeCnt |
| Unrelated Bus Incm Over Limit | false | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | false | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | false | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | false | TaxablePartyNotificationInd |
| Nondeductible Contributions | false | NondeductibleContributionsInd |
| Indoor Tanning Services | false | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | false | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | false | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 10 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 9 | IndependentVotingMemberCnt |
| Family Or Business Rln | false | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | false | DelegationOfMgmtDutiesInd |
| Change To Org Documents | false | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | false | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | false | MembersOrStockholdersInd |
| Election Of Board Members | false | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | false | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (true) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (true) | MinutesOfCommitteesInd |
| Officer Mailing Address | false | OfficerMailingAddressInd |
| Local Chapters | false | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (true) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (true) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (true) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (true) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (true) | WhistleblowerPolicyInd |
| Document Retention Policy | false | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (true) | CompensationProcessCEOInd |
| Compensation Process Other | false | CompensationProcessOtherInd |
| Investment In Joint Venture | false | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | KARA BERASI | PersonNm |
| Phone | 6143546036 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 637 EMERSON PLACE | AddressLine1Txt |
| City | SEVERNA PARK | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 21146 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (10 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Average Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt |
|---|---|---|---|---|---|---|---|
| KARA BERASI | |||||||
| CEO | 20.00 | 0.00 | Yes (X) | Yes (X) | $36,000 | $0 | $0 |
| VICTORIA BLATTER | |||||||
| DIRECTOR | 1.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| JIM CARO | |||||||
| DIRECTOR | 1.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| CHRISTINA NYQUIST | |||||||
| DIRECTOR | 1.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| LISA STEELMAN | |||||||
| DIRECTOR | 1.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| LYNN TAYLOR | |||||||
| DIRECTOR | 1.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| SUSAN THORNTON | |||||||
| BOARD CHAIR/ | 1.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| CHEVESE TURNER | |||||||
| SECRETARY | 1.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| KRISTEN WHEEDEN | |||||||
| PATIENT REP. | 1.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| JANET WOODCOCK | |||||||
| DIRECTOR | 1.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $36,000 | TotalReportableCompFromOrgAmt |
| Former Ofcr Employees Listed | false | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | false | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | false | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp (2 entries)
| Address Line1ContractorAddress/USAddress/AddressLine1Txt | CityContractorAddress/USAddress/CityNm | State AbbreviationContractorAddress/USAddress/StateAbbreviationCd | ZIPContractorAddress/USAddress/ZIPCd | ServicesServicesDesc | CompensationCompensationAmt |
|---|---|---|---|---|---|
| CONSILIUM STRATEGIES | |||||
| 900 EAST FORT ROAD UNIT 428 | BALTIMORE | MD | 21230 | CONSULTING | $282,500 |
| CONNECT 4 STRATEGIES | |||||
| 6005 GLOSTER ROAD | BETHESDA | MD | 20816 | CONSULTING | $135,000 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 2 | CntrctRcvdGreaterThan100KCnt |
| All Other Contributions | $448,047 | AllOtherContributionsAmt |
| Total Contributions | $448,047 | TotalContributionsAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $448,047 | TotalRevenueColumnAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part IX | Yes (X) | InfoInScheduleOPartIXInd |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $36,000 | TotalAmt |
| Program Services | $36,000 | ProgramServicesAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,500 | TotalAmt |
| Management And General | $1,500 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $479,512 | TotalAmt |
| Program Services | $479,512 | ProgramServicesAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $70 | TotalAmt |
| Program Services | $70 | ProgramServicesAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $892 | TotalAmt |
| Management And General | $892 | ManagementAndGeneralAmt |
Payments To Affiliates PaymentsToAffiliatesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,550 | TotalAmt |
| Program Services | $1,550 | ProgramServicesAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $880 | TotalAmt |
| Program Services | $880 | ProgramServicesAmt |
Other Expenses OtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | WORKSHOP EXPENSES | Desc |
| Total | $1,269 | TotalAmt |
| Program Services | $1,269 | ProgramServicesAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $521,673 | TotalAmt |
| Program Services | $519,281 | ProgramServicesAmt |
| Management And General | $2,392 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $402,109 | BOYAmt |
| EOY | $328,483 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $402,109 | BOYAmt |
| EOY | $328,483 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | 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 | $402,109 | BOYAmt |
| EOY | $328,483 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $402,109 | BOYAmt |
| EOY | $328,483 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $402,109 | BOYAmt |
| EOY | $328,483 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$73,626 | ReconcilationRevenueExpnssAmt |
| Method Of Accounting Cash | Yes (X) | MethodOfAccountingCashInd |
| Accountant Compile Or Review | false | AccountantCompileOrReviewInd |
| FS Audited | false | FSAuditedInd |
| Federal Grant Audit Required | false | 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 | $482,707 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $476,038 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $226,966 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $759,000 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $448,047 | CurrentTaxYearAmt |
| Total | $2,392,758 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $482,707 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $476,038 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $226,966 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $759,000 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $448,047 | CurrentTaxYearAmt |
| Total | $2,392,758 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $1,162,633 | SubstantialContributorsTotAmt |
| Public Support Total170 | $1,230,125 | PublicSupportTotal170Amt |
| Total Support | $2,392,758 | TotalSupportAmt |
| Public Support CY170 | 0.51410 | PublicSupportCY170Pct |
| Public Support PY170 | 0.48750 | 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Volunteers | Yes (true) | VolunteersInd |
| Paid Staff Or Management | Yes (true) | PaidStaffOrManagementInd |
| Media Advertisements | false | MediaAdvertisementsInd |
| Mailings Members | false | MailingsMembersInd |
| Publications Or Broadcast | false | PublicationsOrBroadcastInd |
| Grants Other Organizations | false | GrantsOtherOrganizationsInd |
| Direct Contact Legislators | Yes (true) | DirectContactLegislatorsInd |
| Direct Contact Legislators | $10,000 | DirectContactLegislatorsAmt |
| Rallies Demonstrations | false | RalliesDemonstrationsInd |
| Other Activities | false | OtherActivitiesInd |
| Total Lobbying Expenditures | $10,000 | TotalLobbyingExpendituresAmt |
| Not Described Section501c3 | false | NotDescribedSection501c3Ind |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | SCHEDULE C, PART IV | FormAndLineReferenceDesc |
| Explanation | PART II-B LINE 1A, 1B, 1E, AND 1G THE ORGANIZATION UTILIZES VOLUNTEERS AND PAID CONSULTANTS TO RESEARCH POLICIES AND PROVIDE EDUCATION FOR LEGISLATORS ON RARE AND ULTRA-RARE DISEASE ISSUES. | ExplanationTxt |
Schedule L IRS990ScheduleL
Bus Tr Involve Interested Prsn BusTrInvolveInterestedPrsnGrp
Name Of Interested NameOfInterested
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | CONNECT 4 STRATEGIES | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Relationship Description | FOUNDER OF ORG | RelationshipDescriptionTxt |
| Transaction | $135,000 | TransactionAmt |
| Transaction | RESEARCH AND SUPPORT | TransactionDesc |
| Sharing Of Revenues | false | SharingOfRevenuesInd |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PAGE 2, PART III, LINE 4A | THE ORGANIZATION BRINGS TOGETHER PATIENT ORGANIZATIONS REPRESENTING PATIENTS SUFFERING FROM OR CARING FOR PATIENTS WITH EXTREMELY RARE DISEASES. THIS IS ACCOMPLISHED THROUGH EDUCATING POLICYMAKERS AND STAKEHOLDERS ABOUT THE BARRIERS FDA PROCESSES AND INSURANCE FRAMEWORKS CREATE AND PERPETUATE IN RARE AND ULTRA-RARE DISEASES AND HELP THEM RECOGNIZE THE CIRCUMSTANCES OF EXTREMELY RARE CONDITIONS AND TREATMENTS AND EXPAND INCENTIVES CRITICAL TO ENSURING THEY CAN REACH PATIENTS. POLICY INITIATIVES AND RARE DISEASE PRIORITIES: HAYSTACK PROJECT WORKS WITH PATIENTS TO HELP THEM LEARN HOW TO ADVOCATE FOR THEIR COMMUNITIES AND IMPROVE. MODERNIZATION OF RARE DISEASE CLINICAL TRIALS: WORK FOCUSED ON RETHINKING CLINICAL TRIALS FOR RARE DISEASES. PATIENT EDUCATION & ENGAGEMENT: SPEAKER SERIES WHERE WE BRING VARIOUS EXPERTS TO SPEAK TO ISSUES RELATED TO RARE DISEASES. MEMBER ORGANIZATIONS ARE ABLE TO LISTEN AND ASK QUESTIONS. ALSO CONDUCT MEMBER MEETINGS TO EDUCATE ABOUT CURRENT EVENTS, HAYSTACK INITIATIVES, AND HELP ANSWER QUESTIONS. |
| FORM 990, PAGE 6, PART VI, LINE 11B | THE ORGANIZATION REVIEWS THE 990 FORM AT A BOARD MEETING PRIOR TO SUBMITTING TO THE IRS. |
| FORM 990, PAGE 6, PART VI, LINE 12C | THE ORGANIZATION ENFORCED COMPLIANCE WITH ITS CONFLICT OF INTEREST POLICY BY REVIEWING IT PERIODICALLY AT BOARD MEETINGS. |
| FORM 990, PAGE 6, PART VI, LINE 15A | THE ORGANIZATION USES THE FOLLOWING METHODS TO ESTABLISH COMPENSATION PACKAGES FOR ITS EMPLOYEES: APPROVAL BY THE BOARD. |
| FORM 990, PAGE 6, PART VI, LINE 19 | THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, & FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC VIA ORGANIZATION'S WEBSITE & UPON REQUEST. |
| FORM 990, PART IX, LINE 11G | CONSULTATION 417,500 0 0 CONTRACT LABOR 62,012 0 0 TOTAL 479,512 0 0 |
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