Liabilities / Assets
25th percentile
Higher debt load relative to assets than 25% of similar nonprofits.
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
25th percentile
Higher debt load relative to assets than 25% of similar nonprofits.
Liabilities / Revenue
22nd percentile
Higher debt load relative to revenue than 22% of similar nonprofits.
Net Margin
87th percentile
Higher net margin than 87% of similar nonprofits.
Top Officer Pay
50th percentile
Higher top officer pay than 50% of similar nonprofits.
Top officer pay equals 3.5% of source-year revenue.
Asset Growth
91st percentile
Faster asset growth than 91% of similar nonprofits.
Revenue Growth
77th percentile
Faster revenue growth than 77% of similar nonprofits.
Assets
Up$1,985,458
Up $840,346 (+73%) from 2020
Net Assets
Up$1,977,560
Up $836,396 (+73%) from 2020
Liabilities
Up$7,898
Up $3,950 (+100%) from 2020
Revenue
Up$1,636,401
Up $564,505 (+53%) from 2020
Expenses
Up$800,005
Up $245,651 (+44%) from 2020
Net Income
Up$836,396
Up $318,854 (+62%) from 2020
The mission of ehe foundation is to seek treatments and a cure for epitheliod hemangioendofthelioma ehe by increasing awareness, pursuing scientific research, advocating for and supporting ehe patients and bridging information between researchers, providers and patients.
The mission of the ehe foundation is to seek treatments and a cure for epitheliod hemangioendofthelioma ehe by increasing awareness, pursuing scientific research, advocating for and supporting ehe patients.
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Cash and Non-Interest-Bearing Accounts | $1,145,112 | $1,970,458 | ▲ $825,346 |
| Accounts Receivable | - | $15,000 | - |
| Total Assets | $1,145,112 | $1,985,458 | ▲ $840,346 |
| Liabilities | |||
| Accounts Payable and Accrued Expenses | $3,948 | $7,898 | ▲ $3,950 |
| Total Liabilities | $3,948 | $7,898 | ▲ $3,950 |
| Net Assets / Fund Balance | |||
| Net Assets Without Donor Restrictions | $514,804 | $1,640,948 | ▲ $1,126,144 |
| Net Assets With Donor Restrictions | $626,360 | $336,612 | ▼ $289,748 |
| Total Net Assets Fund Balance | $1,141,164 | $1,977,560 | ▲ $836,396 |
| Total Liabilities and Net Assets / Fund Balance | $1,145,112 | $1,985,458 | ▲ $840,346 |
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Denise Robinson | Director of Research | FT | $57,600 | $57,600 |
| Name | Title |
|---|---|
| Jenni Kovach | President |
| Julia Wahl | Vice President |
| Amy Baghdadi | Board Member |
| David Casimir | Board Member |
| Leeann Conner | Director of Marketing |
| Sarah Yaneza | Treasurer |
| Line Item | Amount |
|---|---|
| Other Expenses | $459,229 |
| Grants and Similar Amounts Paid | $340,776 |
| Professional Fundraising Fees | $0 |
| Salaries, Compensation, and Employee Benefits | $0 |
| Total Fundraising Expense | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Fees for Services Management | $394,932 | - | - | $394,932 |
| Grants to Domestic Orgs | $315,768 | - | - | $315,768 |
| Conferences and Meetings | $48,549 | - | - | $48,549 |
| Grants to Domestic Individuals | $25,008 | - | - | $25,008 |
| Fees for Services Accounting | $5,000 | - | - | $5,000 |
| Insurance | $1,486 | - | - | $1,486 |
| Advertising | $1,379 | - | - | $1,379 |
| Occupancy | $924 | - | - | $924 |
| Other Expenses | $400 | - | - | $400 |
| Office Expenses | $340 | - | - | $340 |
| Total Functional Expenses | $800,005 | $0 | $0 | $800,005 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| Memorial Sloan Kttering Cancer Center | New York, NY | - | Research and Development | $217,500 |
| Albany Medical College | Albany, NY | - | Research and Development | $40,000 |
| The Broad Institute Inc | Cambridge, MA | - | Research and Development | $33,080 |
| Coriell Institute for Medical Research | Camden, NJ | - | Research and Development | $15,188 |
| National Org for Rare Disorders | Danbury, CT | - | Research and Development | $10,000 |
| Line Item | Amount |
|---|---|
| Fundraising Gross Income | $68,876 |
| Fundraising Direct Expenses | $5,508 |
| Professional Fundraising Fees | $0 |
| Event | Gross Receipts | Gross Revenue | Direct Expenses | Net Income |
|---|---|---|---|---|
| 5K Race | $68,876 | $68,876 | $5,508 | $63,368 |
| Total Events | $68,876 | $68,876 | $5,508 | $63,368 |
“Schedule i includes list of assistance to domestic organizations.”
This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.
| Path | # | Value |
|---|---|---|
| IRS990/AccountantCompileOrReviewInd | 0 | false |
| IRS990/AccountsPayableAccrExpnssGrp/BOYAmt | 0 | 3948 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 7898 |
| IRS990/AccountsReceivableGrp/EOYAmt | 0 | 15000 |
| IRS990/ActivitiesConductedPrtshpInd | 0 | false |
| IRS990/ActivityOrMissionDesc | 0 | THE MISSION OF THE EHE FOUNDATION IS TO SEEK TREATMENTS AND A CURE FOR EPITHELIOD HEMANGIOENDOFTHELIOMA EHE BY INCREASING AWARENESS, PURSUING SCIENTIFIC RESEARCH, ADVOCATING FOR AND SUPPORTING EHE PATIENTS. |
| IRS990/AdvertisingGrp/ProgramServicesAmt | 0 | 1379 |
| IRS990/AdvertisingGrp/TotalAmt | 0 | 1379 |
| IRS990/AllOtherContributionsAmt | 0 | 1555159 |
| IRS990/AllOtherExpensesGrp/TotalAmt | 0 | 0 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | true |
| IRS990/AuditCommitteeInd | 0 | true |
| IRS990/BackupWthldComplianceInd | 0 | true |
| IRS990/BenefitsToMembersGrp/TotalAmt | 0 | 0 |
| IRS990/BooksInCareOfDetail/PersonNm | 0 | Julia Wahl |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 9062806432 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 1561 HOPI CT |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | HOBART |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | WI |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 54313 |
| IRS990/BusinessRlnWith35CtrlEntInd | 0 | false |
| IRS990/BusinessRlnWithFamMemInd | 0 | false |
| IRS990/BusinessRlnWithOrgMemInd | 0 | false |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 1145112 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 1970458 |
| IRS990/ChangeToOrgDocumentsInd | 0 | false |
| IRS990/CollectionsOfArtInd | 0 | false |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 0 |
| IRS990/CompDisqualPersonsGrp/TotalAmt | 0 | 0 |
| IRS990/CompensationFromOtherSrcsInd | 0 | false |
| IRS990/CompensationProcessCEOInd | 0 | true |
| IRS990/CompensationProcessOtherInd | 0 | true |
| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 48549 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 48549 |
| IRS990/ConflictOfInterestPolicyInd | 0 | true |
| IRS990/ConservationEasementsInd | 0 | false |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | false |
| IRS990/CreditCounselingInd | 0 | false |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 1555159 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 340776 |
| IRS990/CYInvestmentIncomeAmt | 0 | 17782 |
| IRS990/CYOtherExpensesAmt | 0 | 459229 |
| IRS990/CYOtherRevenueAmt | 0 | 63368 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 92 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 836396 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 0 |
| IRS990/CYTotalExpensesAmt | 0 | 800005 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 0 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 1636401 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | false |
| IRS990/DeductibleArtContributionInd | 0 | false |
| IRS990/DeductibleNonCashContriInd | 0 | false |
| IRS990/DelegationOfMgmtDutiesInd | 0 | false |
| IRS990/DepreciationDepletionGrp/TotalAmt | 0 | 0 |
| IRS990/Desc | 0 | IN 2021, THE EHE FOUNDATION ORGANIZED AND HOSTED SEVERAL NATIONAL AND INTERNATIONAL GRASSROOTS FUNDRAISING EVENTS TO RAISE FUNDS AND AWARENESS OF EHE. THESE EVENTS INCLUDED THE ANNUAL GLOBAL 5K, SEVERAL LOCAL AND REGIONAL VIRTUAL 5K RUN/WALKS AND A GIVING TUESDAY DOUBLING EVENT. |
| IRS990/DescribedInSection501c3Ind | 0 | true |
| IRS990/DisregardedEntityInd | 0 | false |
| IRS990/DocumentRetentionPolicyInd | 0 | true |
| IRS990/DonorAdvisedFundInd | 0 | false |
| IRS990/DonorRestrictionNetAssetsGrp/BOYAmt | 0 | 626360 |
| IRS990/DonorRestrictionNetAssetsGrp/EOYAmt | 0 | 336612 |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | false |
| IRS990/ElectionOfBoardMembersInd | 0 | true |
| IRS990/EmployeeCnt | 0 | 0 |
| IRS990/EngagedInExcessBenefitTransInd | 0 | false |
| IRS990/ExcsTaxSect4951Or4952Or4953Ind | 0 | false |
| IRS990/FamilyOrBusinessRlnInd | 0 | false |
| IRS990/FederalGrantAuditRequiredInd | 0 | false |
| IRS990/FeesForServicesAccountingGrp/ProgramServicesAmt | 0 | 5000 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 5000 |
| IRS990/FeesForServicesLegalGrp/TotalAmt | 0 | 0 |
| IRS990/FeesForServicesLobbyingGrp/TotalAmt | 0 | 0 |
| IRS990/FeesForServicesManagementGrp/ProgramServicesAmt | 0 | 394932 |
| IRS990/FeesForServicesManagementGrp/TotalAmt | 0 | 394932 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 0 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/TotalAmt | 0 | 0 |
| IRS990/ForeignActivitiesInd | 0 | false |
| IRS990/ForeignFinancialAccountInd | 0 | false |
| IRS990/ForeignGrantsGrp/TotalAmt | 0 | 0 |
| IRS990/ForeignOfficeInd | 0 | false |
| IRS990/Form1098CFiledInd | 0 | false |
| IRS990/Form8282PropertyDisposedOfInd | 0 | false |
| IRS990/Form8899Filedind | 0 | false |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 040.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 007.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 045.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 025.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 003.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 001.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 003.00 |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 4 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 5 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 6 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 0 | DENISE ROBINSON |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | JENNI KOVACH |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | JULIA WAHL |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | LEEANN CONNER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | SARAH YANEZA |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | DAVID CASIMIR |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | AMY BAGHDADI |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 57600 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 0 | DIRECTOR OF RESEARCH |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | PRESIDENT |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | VICE PRESIDENT |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | DIRECTOR OF MARKETING |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | TREASURER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | BOARD MEMBER |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | true |
| IRS990/FormationYr | 0 | 2015 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | false |
| IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/FSAuditedInd | 0 | false |
| IRS990/FundraisingActivitiesInd | 0 | true |
| IRS990/FundraisingDirectExpensesAmt | 0 | 5508 |
| IRS990/FundraisingGrossIncomeAmt | 0 | 68876 |
| IRS990/GamingActivitiesInd | 0 | false |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 7 |
| IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt | 0 | 25008 |
| IRS990/GrantsToDomesticIndividualsGrp/TotalAmt | 0 | 25008 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 315768 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 315768 |
| IRS990/GrantsToIndividualsInd | 0 | true |
| IRS990/GrantsToOrganizationsInd | 0 | true |
| IRS990/GrantToRelatedPersonInd | 0 | false |
| IRS990/GrossReceiptsAmt | 0 | 1641909 |
| IRS990/GroupReturnForAffiliatesInd | 0 | false |
| IRS990/IncludeFIN48FootnoteInd | 0 | false |
| IRS990/IndependentAuditFinclStmtInd | 0 | false |
| IRS990/IndependentVotingMemberCnt | 0 | 7 |
| IRS990/IndoorTanningServicesInd | 0 | false |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 0 |
| IRS990/InsuranceGrp/ProgramServicesAmt | 0 | 1486 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 1486 |
| IRS990/InterestGrp/TotalAmt | 0 | 0 |
| IRS990/InvestmentIncomeGrp/RelatedOrExemptFuncIncomeAmt | 0 | 17782 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 17782 |
| IRS990/InvestmentInJointVentureInd | 0 | false |
| IRS990/IRPDocumentCnt | 0 | 4 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LegalDomicileStateCd | 0 | AK |
| IRS990/LoanOutstandingInd | 0 | false |
| IRS990/LobbyingActivitiesInd | 0 | false |
| IRS990/LocalChaptersInd | 0 | false |
| IRS990/MaterialDiversionOrMisuseInd | 0 | false |
| IRS990/MembersOrStockholdersInd | 0 | true |
| IRS990/MethodOfAccountingCashInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | true |
| IRS990/MinutesOfGoverningBodyInd | 0 | true |
| IRS990/MissionDesc | 0 | THE MISSION OF THE EHE FOUNDATION IS TO SEEK TREATMENTS AND A CURE FOR EPITHELIOD HEMANGIOENDOFTHELIOMA EHE BY INCREASING AWARENESS, PURSUING SCIENTIFIC RESEARCH, ADVOCATING FOR AND SUPPORTING EHE PATIENTS AND BRIDGING INFORMATION BETWEEN RESEARCHERS, PROVIDERS AND PATIENTS. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | false |
| IRS990/MoreThan5000KToOrgInd | 0 | false |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 1141164 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 1977560 |
| IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt | 0 | 63368 |
| IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt | 0 | 514804 |
| IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt | 0 | 1640948 |
| IRS990/NondeductibleContributionsInd | 0 | false |
| IRS990/OccupancyGrp/ProgramServicesAmt | 0 | 924 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 924 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 340 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 340 |
| IRS990/OfficerMailingAddressInd | 0 | false |
| IRS990/OperateHospitalInd | 0 | false |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsFASB117Ind | 0 | X |
| IRS990/OtherEmployeeBenefitsGrp/TotalAmt | 0 | 0 |
| IRS990/OtherExpensesGrp/Desc | 0 | SOFTWARE |
| IRS990/OtherExpensesGrp/Desc | 1 | BANK FEES |
| IRS990/OtherExpensesGrp/Desc | 2 | DUES AND SUBSCRIPTIONS |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 3625 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 2594 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 2 | 400 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 3625 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 2594 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 400 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 0 |
| IRS990/PartialLiquidationInd | 0 | false |
| IRS990/PaymentsToAffiliatesGrp/TotalAmt | 0 | 0 |
| IRS990/PayPremiumsPrsnlBnftCntrctInd | 0 | false |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 0 |
| IRS990/PensionPlanContributionsGrp/TotalAmt | 0 | 0 |
| IRS990/PoliticalCampaignActyInd | 0 | false |
| IRS990/PrincipalOfficerNm | 0 | JULIA WAHL |
| IRS990/ProfessionalFundraisingInd | 0 | true |
| IRS990/ProgramServiceRevenueGrp/Desc | 0 | MERCHANDISE |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 0 | 92 |
| IRS990/ProgSrvcAccomActy3Grp/Desc | 0 | IN 2020, THE EHE FOUNDATION CONTINUED ITS SUPPORT OF STRATEGIC RESEARCH INITIATIVES FOCUSED ON GENETIC REGULATION OF EHE, DEVELOPMENT OF A CELL LINE IN PARTNERSHIP WITH THE BROAD INSTITUTE RARE CANCER DEPENDENCY MAP INITIATIVE, AND MAPPING OF EHE GENETICS AND MICROENVIRONMENT. IN ADDITION, THE FOUNDATION IMPLEMENTED A BIOBANK, TO CREATE A REPOSITORY FOR DONATED EHE TISSUE FROM PATIENTS TO SUPPORT RESEARCH EFFORTS. THE FOUNDATION ALSO SUPPORTED THE RESEARCH EFFORTS AT THE EHE INTERNATIONAL CENTER OF EXPERTISE AND CONTINUED AS A PARTNER ADVOCACY ORGANIZATION WITH THE NCI MYPART NATURAL HISTORY STUDY.ALSO IN 2021, THE FOUNDATION CONTINUED TO RECEIVE SUPPORT FROM THE CHAN ZUCKBERGERG INITIATIVE, RARE AS ONE PROJECT WITH THE GOAL TO ESTABLISH AN INTERNATIONAL PATIENT-LED RESEARCH NETWORK ON SHARED RESEARCH PRIORITIES. |
| IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt | 0 | 800005 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | false |
| IRS990/PYContributionsGrantsAmt | 0 | 1016103 |
| IRS990/PYExcessBenefitTransInd | 0 | false |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 534540 |
| IRS990/PYInvestmentIncomeAmt | 0 | 825 |
| IRS990/PymtTravelEntrtnmntPubOfclGrp/TotalAmt | 0 | 0 |
| IRS990/PYOtherExpensesAmt | 0 | 19814 |
| IRS990/PYOtherRevenueAmt | 0 | 6695 |
| IRS990/PYProgramServiceRevenueAmt | 0 | 48273 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 517542 |
| IRS990/PYTotalExpensesAmt | 0 | 554354 |
| IRS990/PYTotalRevenueAmt | 0 | 1071896 |
| IRS990/QuidProQuoContributionsInd | 0 | false |
| IRS990/RcvFndsToPayPrsnlBnftCntrctInd | 0 | false |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 836396 |
| IRS990/RegularMonitoringEnfrcInd | 0 | true |
| IRS990/RelatedEntityInd | 0 | false |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | false |
| IRS990/ReportInvestmentsOtherSecInd | 0 | false |
| IRS990/ReportLandBuildingEquipmentInd | 0 | false |
| IRS990/ReportOtherAssetsInd | 0 | false |
| IRS990/ReportOtherLiabilitiesInd | 0 | false |
| IRS990/ReportProgramRelatedInvstInd | 0 | false |
| IRS990/RoyaltiesGrp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt | 0 | 1064376 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 525033 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 426755 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 171811 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt | 0 | 2187975 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt | 0 | 1555159 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt | 0 | 1064376 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 525033 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 426755 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 154361 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt | 0 | 3725684 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus1YearAmt | 0 | 11276 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus2YearsAmt | 0 | 48576 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus3YearsAmt | 0 | 12607 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus4YearsAmt | 0 | 17450 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/TotalAmt | 0 | 89909 |
| IRS990ScheduleA/GrossReceiptsNonUnrltBusGrp/CurrentTaxYearAmt | 0 | 68876 |
| IRS990ScheduleA/GrossReceiptsNonUnrltBusGrp/TotalAmt | 0 | 68876 |
| IRS990ScheduleA/InvestmentIncomeCYPct | 0 | 0.00000 |
| IRS990ScheduleA/NetIncomeFromOtherUBIGrp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/OtherIncome509Grp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/Post1975UBTIGrp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/PubliclySupportedOrg509a2Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY170Pct | 0 | 1.00000 |
| IRS990ScheduleA/PublicSupportCY509Pct | 0 | 1.00000 |
| IRS990ScheduleA/PublicSupportPY509Pct | 0 | 1.00000 |
| IRS990ScheduleA/PublicSupportTotal170Amt | 0 | 2187975 |
| IRS990ScheduleA/PublicSupportTotal509Amt | 0 | 3884469 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind | 0 | X |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind | 0 | X |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt | 0 | 1624035 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt | 0 | 1075652 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 573609 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 439362 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 171811 |
| IRS990ScheduleA/Total509Grp/TotalAmt | 0 | 3884469 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt | 0 | 1064376 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 525033 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 426755 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 171811 |
| IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt | 0 | 2187975 |
| IRS990ScheduleA/TotalSupportAmt | 0 | 2187975 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt | 0 | 1624035 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt | 0 | 1075652 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt | 0 | 573609 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt | 0 | 439362 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt | 0 | 171811 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt | 0 | 3884469 |
| IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorNum | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine2 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt | 0 | RESTRICTED |
| IRS990/ScheduleBRequiredInd | 0 | false |
| IRS990ScheduleG/AgrmtProfFundraisingActyInd | 0 | false |
| IRS990ScheduleG/AllStatesCd | 0 | All States |
| IRS990ScheduleG/EmailSolicitationsInd | 0 | X |
| IRS990ScheduleG/FundraisingEventInformationGrp/DirectExpenseSummaryEventsAmt | 0 | 5508 |
| IRS990ScheduleG/FundraisingEventInformationGrp/Event1Nm | 0 | 5K Race |
| IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsEvent1Amt | 0 | 68876 |
| IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsTotalAmt | 0 | 68876 |
| IRS990ScheduleG/FundraisingEventInformationGrp/GrossRevenueEvent1Amt | 0 | 68876 |
| IRS990ScheduleG/FundraisingEventInformationGrp/GrossRevenueTotalEventsAmt | 0 | 68876 |
| IRS990ScheduleG/FundraisingEventInformationGrp/NetIncomeSummaryAmt | 0 | 63368 |
| IRS990ScheduleG/FundraisingEventInformationGrp/OthDirectExpnssTotalEventsAmt | 0 | 5508 |
| IRS990ScheduleG/FundraisingEventInformationGrp/OtherDirectExpensesEvent1Amt | 0 | 5508 |
| IRS990ScheduleG/SpecialFundraisingEventsInd | 0 | X |
| IRS990ScheduleI/GrantRecordsMaintainedInd | 0 | true |
| IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/CashGrantAmt | 0 | 25008 |
| IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/GrantTypeTxt | 0 | RESEARCH AND DEVLOPMENT |
| IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/RecipientCnt | 0 | 1 |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 0 | 10000 |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 1 | 15188 |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 2 | 33080 |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 3 | 217500 |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 4 | 40000 |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 0 | RESEARCH AND DEVELOPMENT |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 1 | RESEARCH AND DEVELOPMENT |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 2 | RESEARCH AND DEVELOPMENT |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 3 | RESEARCH AND DEVELOPMENT |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 4 | RESEARCH AND DEVELOPMENT |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 0 | NATIONAL ORG FOR RARE DISORDERS |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 1 | CORIELL INSTITUTE FOR MEDICAL RESEARCH |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 2 | THE BROAD INSTITUTE INC |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 3 | MEMORIAL SLOAN KTTERING CANCER CENTER |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 4 | ALBANY MEDICAL COLLEGE |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 0 | 133223946 |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 1 | 210672684 |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 2 | 263428781 |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 3 | 131924236 |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 4 | 141338307 |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 0 | 55 KENOSIA AVENUE |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 1 | 403 HADDON AVENUE |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 2 | 320 CHALES STREET |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 3 | 1275 YORK AVENUE |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 4 | 43 NEW SCOTLAND AVENUE |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 0 | DANBURY |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 1 | CAMDEN |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 2 | CAMBRIDGE |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 3 | NEW YORK |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 4 | ALBANY |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 0 | CT |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 1 | NJ |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 2 | MA |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 3 | NY |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 4 | NY |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 0 | 06810 |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 1 | 08103 |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 2 | 02141 |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 3 | 10065 |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 4 | 12208 |
| IRS990ScheduleI/TotalOtherOrgCnt | 0 | 5 |
| IRS990/ScheduleJRequiredInd | 0 | false |
| IRS990/ScheduleORequiredInd | 0 | true |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | SCHEDULE I INCLUDES LIST OF ASSISTANCE TO DOMESTIC ORGANIZATIONS. |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Form 990, Part IV, Line 22 |
| IRS990/SchoolOperatingInd | 0 | false |
| IRS990/SignificantChangeInd | 0 | false |
| IRS990/SignificantNewProgramSrvcInd | 0 | false |
| IRS990/StatesWhereCopyOfReturnIsFldCd | 0 | AK |
| IRS990/SubjectToExcsTaxNetInvstIncInd | 0 | false |
| IRS990/SubjectToProxyTaxInd | 0 | false |
| IRS990/SubjToTaxRmnrtnExPrchtPymtInd | 0 | false |
| IRS990/TaxablePartyNotificationInd | 0 | false |
| IRS990/TaxExemptBondsInd | 0 | false |
| IRS990/TerminateOperationsInd | 0 | false |
| IRS990/TotalAssetsBOYAmt | 0 | 1145112 |
| IRS990/TotalAssetsEOYAmt | 0 | 1985458 |
| IRS990/TotalAssetsGrp/BOYAmt | 0 | 1145112 |
| IRS990/TotalAssetsGrp/EOYAmt | 0 | 1985458 |
| IRS990/TotalCompGreaterThan150KInd | 0 | false |
| IRS990/TotalContributionsAmt | 0 | 1555159 |
| IRS990/TotalEmployeeCnt | 0 | 0 |
| IRS990/TotalFunctionalExpensesGrp/FundraisingAmt | 0 | 0 |
| IRS990/TotalFunctionalExpensesGrp/ManagementAndGeneralAmt | 0 | 0 |
| IRS990/TotalFunctionalExpensesGrp/ProgramServicesAmt | 0 | 800005 |
| IRS990/TotalFunctionalExpensesGrp/TotalAmt | 0 | 800005 |
| IRS990/TotalGrossUBIAmt | 0 | 0 |
| IRS990/TotalLiabilitiesBOYAmt | 0 | 3948 |
| IRS990/TotalLiabilitiesEOYAmt | 0 | 7898 |
| IRS990/TotalLiabilitiesGrp/BOYAmt | 0 | 3948 |
| IRS990/TotalLiabilitiesGrp/EOYAmt | 0 | 7898 |
| IRS990/TotalNetAssetsFundBalanceGrp/BOYAmt | 0 | 1141164 |
| IRS990/TotalNetAssetsFundBalanceGrp/EOYAmt | 0 | 1977560 |
| IRS990/TotalProgramServiceExpensesAmt | 0 | 800005 |
| IRS990/TotalProgramServiceRevenueAmt | 0 | 92 |
| IRS990/TotalReportableCompFromOrgAmt | 0 | 57600 |
| IRS990/TotalRevenueGrp/RelatedOrExemptFuncIncomeAmt | 0 | 17782 |
| IRS990/TotalRevenueGrp/TotalRevenueColumnAmt | 0 | 1636401 |
| IRS990/TotalVolunteersCnt | 0 | 7 |
| IRS990/TotLiabNetAssetsFundBalanceGrp/BOYAmt | 0 | 1145112 |
| IRS990/TotLiabNetAssetsFundBalanceGrp/EOYAmt | 0 | 1985458 |
| IRS990/TravelGrp/TotalAmt | 0 | 0 |
| IRS990/TrnsfrExmptNonChrtblRltdOrgInd | 0 | false |
| IRS990/TypeOfOrganizationCorpInd | 0 | X |
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Displayed year
2021 • Form 990Detailed filing. Detailed filing data is available for this year.
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