N 1 COLLABORATIVE INC: Form 990, tax year 2025
View the entire original 990 at ProPublica ↗
- Organization
- N 1 COLLABORATIVE INC (EIN 88-2591503)
- Tax period
- 2025-01-01 to 2025-12-31
- Filed
- 2026-05-15
- IRS object ID
- 202631359349311578
- 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 | 2026-05-15T15:46:36-04:00 | ReturnTs |
| Tax Period End | 2025-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 274760605 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | KULLMAN CPA LLC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 888 BESTGATE ROAD SUITE 316 | AddressLine1Txt |
| City | ANNAPOLIS | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 21401 | 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 | 882591503 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | THE N 1 COLLABORATIVE INC | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | N1CO | BusinessNameControlTxt |
| Phone | 7726789669 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 7 CAROLE PLACE | AddressLine1Txt |
| City | SOMERVILLE | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 02143 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | WINSTON YAN | PersonNm |
| Person Title | PRESIDENT | PersonTitleTxt |
| Phone | 7726789669 | PhoneNum |
| Signature | 2026-05-13 | SignatureDt |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | STEPHEN J KULLMAN CPA | PreparerPersonNm |
| PTIN | P00308157 | PTIN |
| Phone | 4102669885 | PhoneNum |
| Preparation | 2026-05-13 | 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 | WINSTON YAN | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 7 CAROLE PLACE | AddressLine1Txt |
| City | SOMERVILLE | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 02143 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $894,517 | GrossReceiptsAmt |
| Group Return For Affiliates | false | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.N1COLLABORATIVE.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2022 | FormationYr |
| Legal Domicile State | DE | LegalDomicileStateCd |
| Activity Or Mission | TO MAKE INDIVIDUALIZED MEDICINES ROUTINELY AND RAPIDLY ACCESSIBLE TO RARE DISEASE PATIENTS WORLDWIDE. | ActivityOrMissionDesc |
| Voting Members Governing Body | 6 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 6 | VotingMembersIndependentCnt |
| Total Employee | 2 | TotalEmployeeCnt |
| Total Volunteers | 60 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| PY Contributions Grants | $453,327 | PYContributionsGrantsAmt |
| CY Contributions Grants | $894,517 | CYContributionsGrantsAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| CY Investment Income | $0 | CYInvestmentIncomeAmt |
| CY Other Revenue | $0 | CYOtherRevenueAmt |
| PY Total Revenue | $453,327 | PYTotalRevenueAmt |
| CY Total Revenue | $894,517 | CYTotalRevenueAmt |
| CY Grants And Similar Paid | $0 | CYGrantsAndSimilarPaidAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $263,329 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $240,529 | CYSalariesCompEmpBnftPaidAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $48,436 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $181,845 | PYOtherExpensesAmt |
| CY Other Expenses | $83,363 | CYOtherExpensesAmt |
| PY Total Expenses | $445,174 | PYTotalExpensesAmt |
| CY Total Expenses | $323,892 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $8,153 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $570,625 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $125,543 | TotalAssetsBOYAmt |
| Total Assets EOY | $696,918 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $5,306 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $6,056 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $120,237 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $690,862 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | TO MAKE INDIVIDUALIZED MEDICINES ROUTINELY AND RAPIDLY ACCESSIBLE TO RARE DISEASE PATIENTS WORLDWIDE. | MissionDesc |
| Significant New Program Srvc | false | SignificantNewProgramSrvcInd |
| Significant Change | false | SignificantChangeInd |
| Expense | $72,653 | ExpenseAmt |
| Desc | IN 2025, THE ORGANIZATION LAUNCHED TWO OPENLY ACCESSIBLE DATABASES TO SERVE PATIENTS, FAMILIES, RESEARCHERS, AND CLINICIANS WORKING IN THE INDIVIDUALIZED MEDICINE SPACE. THE GENE REGISTRY CATALOGS N-OF-1 PROJECTS, ASSESSED VARIANTS, AND MARKETED GENETIC THERAPIES, PROVIDING A CENTRALIZED RESOURCE TO ADVANCE AWARENESS AND KNOWLEDGE-SHARING ACROSS THE INDIVIDUALIZED MEDICINE FIELD. THE CONNECTIONS PLATFORM ENABLES PEER-TO- PEER NETWORKING ACROSS THE RARE DISEASE COMMUNITY, LINKING PATIENTS AND FAMILIES WITH ONE ANOTHER AS WELL AS WITH RESEARCHERS AND CLINICIANS WORKING ON RELEVANT CONDITIONS, AND HAS GROWN TO MORE THAN 400 COMMUNITY MEMBERS SINCE ITS LAUNCH. BOTH PLATFORMS ARE DESIGNED TO REDUCE THE INFORMATION AND ISOLATION BARRIERS THAT CHARACTERIZE ULTRA-RARE DISEASE. THE ULTIMATE BENEFICIARIES ARE PATIENTS WITH ULTRA-RARE GENETIC CONDITIONS AND THEIR FAMILIES, WHO GAIN ACCESS TO CRITICAL SCIENTIFIC INFORMATION AND A COMMUNITY OF INDIVIDUALS AND EXPERTS WHO CAN SUPPORT THEIR PATH TOWARD TREATMENT. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $64,432 | ExpenseAmt |
| Desc | THE ORGANIZATION HOSTED ITS ANNUAL MEETING AND A SERIES OF VIRTUAL SEMINARS IN 2025, EACH REACHING BETWEEN 100 AND 200 PARTICIPANTS ACROSS THE INDIVIDUALIZED MEDICINE ECOSYSTEM INCLUDING RESEARCHERS, CLINICIANS, PATIENT ADVOCATES, INDUSTRY REPRESENTATIVES, AND FAMILIES OF AFFECTED PATIENTS. EVENTS FEATURED SPEAKERS, PANELS, AND WORKSHOPS FOCUSED ON BEST PRACTICES, COMMUNITY UPDATES, AND FIELD-WIDE STRATEGY FOR ADVANCING INDIVIDUALIZED MEDICINES FOR ULTRA-RARE GENETIC CONDITIONS. BY CONVENING CROSS-SECTOR STAKEHOLDERS IN BOTH IN-PERSON AND VIRTUAL FORMATS, N1C'S CONFERENCES AND SEMINARS ACCELERATE KNOWLEDGE EXCHANGE, FOSTER COLLABORATION, AND BUILD THE SHARED INFRASTRUCTURE NEEDED TO MAKE INDIVIDUALIZED TREATMENTS MORE ROUTINELY AND RAPIDLY ACCESSIBLE TO PATIENTS. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $43,592 | ExpenseAmt |
| Desc | THE ORGANIZATION CONVENES OPEN, CROSS-DISCIPLINARY WORKGROUPS THAT BRING TOGETHER RESEARCHERS, CLINICIANS, AND RARE DISEASE STAKEHOLDERS TO DEVELOP SHARED FRAMEWORKS AND CONSENSUS RESOURCES FOR THE INDIVIDUALIZED MEDICINE FIELD. IN 2025, THE WORKGROUPS PROGRAM PRODUCED CONSENSUS GUIDELINES FOR ASSESSING THE ELIGIBILITY OF PATHOGENIC DNA VARIANTS FOR ANTISENSE OLIGONUCLEOTIDE (ASO) TREATMENTS. WORKGROUPS AND THEIR OUTPUTS ARE OPENLY ACCESSIBLE TO THE BROADER RARE DISEASE COMMUNITY, REACHING MORE THAN 1,000 COMMUNITY MEMBERS INCLUDING RESEARCHERS, CLINICIANS, AND PATIENT ADVOCATES. THE ULTIMATE BENEFICIARIES ARE PATIENTS WITH ULTRA-RARE GENETIC CONDITIONS, WHO GAIN ACCESS TO BETTER-INFORMED CLINICIANS AND RESEARCHERS EQUIPPED WITH SHARED STANDARDS TO EVALUATE AND ADVANCE INDIVIDUALIZED TREATMENT OPTIONS. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $180,677 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (true) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (true) | ScheduleBRequiredInd |
| Political Campaign Acty | false | PoliticalCampaignActyInd |
| Lobbying Activities | false | 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 | false | 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 | 1 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Employee | 2 | EmployeeCnt |
| Employment Tax Returns Filed | false | EmploymentTaxReturnsFiledInd |
| 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 | 6 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 6 | 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 | Yes (true) | DocumentRetentionPolicyInd |
| Compensation Process CEO | false | CompensationProcessCEOInd |
| Compensation Process Other | Yes (true) | CompensationProcessOtherInd |
| Investment In Joint Venture | false | InvestmentInJointVentureInd |
| Other Website | Yes (X) | OtherWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | EVA ZHECHEVA | PersonNm |
| Phone | 9785488949 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 48 KENT ROAD | AddressLine1Txt |
| City | LYNN | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 01904 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| No Listed Persons Compensated | Yes (X) | NoListedPersonsCompensatedInd |
Form990 Part VII Section A Form990PartVIISectionAGrp (6 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt |
|---|---|---|---|---|---|---|
| WINSTON YAN | ||||||
| PRESIDENT | 10.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| JULIA VITARELLO | ||||||
| SECRETARY | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| TIM YU | ||||||
| TREASURER | 10.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| HOLM GRAESSNER | ||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |
| NICOLE BOICE | ||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |
| BRIAN TSENG | ||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Former Ofcr Employees Listed | false | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | false | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | false | CompensationFromOtherSrcsInd |
| All Other Contributions | $894,517 | AllOtherContributionsAmt |
| Total Contributions | $894,517 | TotalContributionsAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $894,517 | TotalRevenueColumnAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $213,000 | TotalAmt |
| Program Services | $127,800 | ProgramServicesAmt |
| Management And General | $42,600 | ManagementAndGeneralAmt |
| Fundraising | $42,600 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $11,954 | TotalAmt |
| Program Services | $7,172 | ProgramServicesAmt |
| Management And General | $2,391 | ManagementAndGeneralAmt |
| Fundraising | $2,391 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $15,575 | TotalAmt |
| Program Services | $9,345 | ProgramServicesAmt |
| Management And General | $3,115 | ManagementAndGeneralAmt |
| Fundraising | $3,115 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $27,160 | TotalAmt |
| Management And General | $27,160 | ManagementAndGeneralAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $21,750 | TotalAmt |
| Program Services | $21,750 | ProgramServicesAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $22,557 | TotalAmt |
| Program Services | $2,978 | ProgramServicesAmt |
| Management And General | $19,249 | ManagementAndGeneralAmt |
| Fundraising | $330 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $264 | TotalAmt |
| Management And General | $264 | ManagementAndGeneralAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $11,632 | TotalAmt |
| Program Services | $11,632 | ProgramServicesAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $323,892 | TotalAmt |
| Program Services | $180,677 | ProgramServicesAmt |
| Management And General | $94,779 | ManagementAndGeneralAmt |
| Fundraising | $48,436 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $125,543 | BOYAmt |
| EOY | $696,918 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $125,543 | BOYAmt |
| EOY | $696,918 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,306 | BOYAmt |
| EOY | $6,056 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,306 | BOYAmt |
| EOY | $6,056 | 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 | $120,237 | BOYAmt |
| EOY | $690,862 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $120,237 | BOYAmt |
| EOY | $690,862 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $125,543 | BOYAmt |
| EOY | $696,918 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $570,625 | ReconcilationRevenueExpnssAmt |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | false | AccountantCompileOrReviewInd |
| FS Audited | false | FSAuditedInd |
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 Minus3 Years | $92,600 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $397,502 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $453,327 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $894,517 | CurrentTaxYearAmt |
| Total | $1,837,946 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus3 Years | $92,600 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $397,502 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $453,327 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $894,517 | CurrentTaxYearAmt |
| Total | $1,837,946 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Support Total170 | $1,837,946 | PublicSupportTotal170Amt |
| Total Support | $1,837,946 | TotalSupportAmt |
| First5 Years170 | Yes (X) | First5Years170Ind |
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 O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PAGE 2, PART III, LINE 4A | IN 2025, THE ORGANIZATION LAUNCHED TWO OPENLY ACCESSIBLE DATABASES TO SERVE PATIENTS, FAMILIES, RESEARCHERS, AND CLINICIANS WORKING IN THE INDIVIDUALIZED MEDICINE SPACE. THE GENE REGISTRY CATALOGS N-OF-1 PROJECTS, ASSESSED VARIANTS, AND MARKETED GENETIC THERAPIES, PROVIDING A CENTRALIZED RESOURCE TO ADVANCE AWARENESS AND KNOWLEDGE-SHARING ACROSS THE INDIVIDUALIZED MEDICINE FIELD. THE CONNECTIONS PLATFORM ENABLES PEER-TO- PEER NETWORKING ACROSS THE RARE DISEASE COMMUNITY, LINKING PATIENTS AND FAMILIES WITH ONE ANOTHER AS WELL AS WITH RESEARCHERS AND CLINICIANS WORKING ON RELEVANT CONDITIONS, AND HAS GROWN TO MORE THAN 400 COMMUNITY MEMBERS SINCE ITS LAUNCH. BOTH PLATFORMS ARE DESIGNED TO REDUCE THE INFORMATION AND ISOLATION BARRIERS THAT CHARACTERIZE ULTRA-RARE DISEASE. THE ULTIMATE BENEFICIARIES ARE PATIENTS WITH ULTRA-RARE GENETIC CONDITIONS AND THEIR FAMILIES, WHO GAIN ACCESS TO CRITICAL SCIENTIFIC INFORMATION AND A COMMUNITY OF INDIVIDUALS AND EXPERTS WHO CAN SUPPORT THEIR PATH TOWARD TREATMENT. |
| FORM 990, PAGE 2, PART III, LINE 4B | THE ORGANIZATION HOSTED ITS ANNUAL MEETING AND A SERIES OF VIRTUAL SEMINARS IN 2025, EACH REACHING BETWEEN 100 AND 200 PARTICIPANTS ACROSS THE INDIVIDUALIZED MEDICINE ECOSYSTEM INCLUDING RESEARCHERS, CLINICIANS, PATIENT ADVOCATES, INDUSTRY REPRESENTATIVES, AND FAMILIES OF AFFECTED PATIENTS. EVENTS FEATURED SPEAKERS, PANELS, AND WORKSHOPS FOCUSED ON BEST PRACTICES, COMMUNITY UPDATES, AND FIELD-WIDE STRATEGY FOR ADVANCING INDIVIDUALIZED MEDICINES FOR ULTRA-RARE GENETIC CONDITIONS. BY CONVENING CROSS-SECTOR STAKEHOLDERS IN BOTH IN-PERSON AND VIRTUAL FORMATS, N1C'S CONFERENCES AND SEMINARS ACCELERATE KNOWLEDGE EXCHANGE, FOSTER COLLABORATION, AND BUILD THE SHARED INFRASTRUCTURE NEEDED TO MAKE INDIVIDUALIZED TREATMENTS MORE ROUTINELY AND RAPIDLY ACCESSIBLE TO PATIENTS. |
| FORM 990, PAGE 6, PART VI, LINE 11B | A COPY OF FORM990WILL BE PROVIDED TO EACH MEMBER OF THE GOVERNING BODY, VIA EMAIL OR AT A BOARD MEETING, PRIOR TO SUBMISSION TO THE INTERNAL REVENUE SERVICE. |
| FORM 990, PAGE 6, PART VI, LINE 12C | EACH BOARD MEMBER MUST SUBMIT A SIGNEDFORM ANNUALLY. |
| FORM 990, PAGE 6, PART VI, LINE 15B | THE BOARD OF DIRECTORS PARTICIPATES IN PRIVATE DISCUSSIONS TO DETERMINE A BASIS FOR THE SALARY OF EMPLOYEES. THE PROCESS USED TO ESTABLISH REASONABLE COMPENSATION WAS DETERMINED BY SEVERAL FACTORS INCLUDING, BUT NOT LIMITED TO: CENSUS DATA AND COMPENSATION REPORTS FOR COMPARABLE INDUSTRY POSITIONS, ANNUAL COST OF LIVING ADJUSTMENTS, JOB DESCRIPTION, ANNUAL PERFORMANCE REVIEW, ORGANIZATION'S BUDGET. |
| FORM 990, PAGE 6, PART VI, LINE 19 | THE GOVERNING DOCUMENTS ARE AVAILABLE UPON REQUEST. |
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