Liabilities / Assets
67th percentile
Higher debt load relative to assets than 67% of similar nonprofits.
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
67th percentile
Higher debt load relative to assets than 67% of similar nonprofits.
Liabilities / Revenue
50th percentile
Higher debt load relative to revenue than 50% of similar nonprofits.
Net Margin
36th percentile
Higher net margin than 36% of similar nonprofits.
Top Officer Pay
92nd percentile
Higher top officer pay than 92% of similar nonprofits.
Top officer pay equals 6.1% of source-year revenue.
Asset Growth
45th percentile
Faster asset growth than 45% of similar nonprofits.
Revenue Growth
41st percentile
Faster revenue growth than 41% of similar nonprofits.
Assets
Up$3,315,841
Up $228,723 (+7.4%) from 2020
Net Assets
Up$2,368,828
Up $326,223 (+16%) from 2020
Liabilities
Down$947,013
Down $97,500 (-9.3%) from 2020
Revenue
Up$5,883,997
Up $316,920 (+5.7%) from 2020
Expenses
Up$5,557,417
Up $390,992 (+7.6%) from 2020
Net Income
Down$326,580
Down $74,072 (-18%) from 2020
To create greater public awareness for rare disease, while connecting, educating and empowering the millions of families and caregivers affected, through an online community and collaborative portal.
Increase public awareness for rare disease and globally connect, empower and educate individuals and rare disease foundations in person, print and online.
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Savings and Temporary Cash Investments | $1,693,191 | $1,693,150 | ▼ $41 |
| Cash and Non-Interest-Bearing Accounts | $842,251 | $1,236,090 | ▲ $393,839 |
| Prepaid Expenses and Deferred Charges | $302,977 | $307,820 | ▲ $4,843 |
| Pledges and Grants Receivable | $109,012 | $0 | ▼ $109,012 |
| Accounts Receivable | $44,324 | $59,565 | ▲ $15,241 |
| Land, Buildings, and Equipment, Net | $81,077 | $11,394 | ▼ $69,683 |
| Inventories for Sale or Use | $4,299 | $1,246 | ▼ $3,053 |
| Total Assets | $3,087,118 | $3,315,841 | ▲ $228,723 |
| Other Assets Total | $9,987 | $6,576 | ▼ $3,411 |
| Liabilities | |||
| Deferred Revenue | $826,214 | $507,504 | ▼ $318,710 |
| Accounts Payable and Accrued Expenses | $218,299 | $439,509 | ▲ $221,210 |
| Total Liabilities | $1,044,513 | $947,013 | ▼ $97,500 |
| Net Assets / Fund Balance | |||
| Net Assets Without Donor Restrictions | $1,933,593 | $2,368,828 | ▲ $435,235 |
| Net Assets With Donor Restrictions | $109,012 | $0 | ▼ $109,012 |
| Total Net Assets Fund Balance | $2,042,605 | $2,368,828 | ▲ $326,223 |
| Total Liabilities and Net Assets / Fund Balance | $3,087,118 | $3,315,841 | ▲ $228,723 |
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Equipment | $10,917 | $249,358 | $260,275 |
| Other Land Buildings | $477 | $3,819 | $4,296 |
| Leasehold Improvements | $0 | $1,133 | $1,133 |
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Craig Martin | CEO | FT | $360,000 | - | $360,000 |
| Pam Ferris | VP Development & Marketing | FT | $224,388 | $7,500 | $231,888 |
| Christain Rubio | VP Strategic Advancement | FT | $199,583 | - | $199,583 |
| MARY K O'CONNOR | VP Development & Marketing | FT | $138,416 | - | $138,416 |
| Christopher Nunes | Finance Director | FT | $60,256 | - | $60,256 |
| Melissa Strodtbeck Term 12021 | Finance Director | FT | $12,552 | - | $12,552 |
| Name | Title |
|---|---|
| Peter Pellizzon | Board Chairman |
| Brad Margus | Director |
| Christina M Hartman | Director |
| Hugh Hempel | Director |
| Indu Navar | Director |
| John Crowley | Director |
| Katie Stevens | Director |
| Neil Kumar | Director |
| Nicole Boice | Founder |
| Caroline Loewy | Treasurer |
| Contractor | Services | Location | Compensation |
|---|---|---|---|
| Rithm Health | Consulting Services | 54 MORTIN STREET, Andover, MA 01810 | $360,000 |
| Levine Media Group | Editorial Services | 21 KINGSTON RD, Kesington, CA 94707 | $139,035 |
| Contribution Type | Contribution Count | Reported Amount | Valuation Method |
|---|---|---|---|
| Other Non Cash Contri Table | 460 | $30,000 | Fair Market Value (FMV) |
| Total Noncash Contributions | 460 | $30,000 | - |
| Line Item | Amount |
|---|---|
| Other Expenses | $3,174,164 |
| Salaries, Compensation, and Employee Benefits | $2,115,223 |
| Total Fundraising Expense | $297,646 |
| Grants and Similar Amounts Paid | $268,030 |
| Professional Fundraising Fees | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Other Salaries and Wages | $971,278 | $105,438 | $20,063 | $1,096,779 |
| Current Officers, Directors, Trustees, and Key Employees | $721,500 | $131,975 | $10,803 | $864,278 |
| Information Technology | $491,373 | $39,285 | $3,624 | $534,282 |
| Grants to Domestic Orgs | $268,030 | - | - | $268,030 |
| Travel | $234,363 | $11,139 | $4,544 | $250,046 |
| Other Expenses | $54,743 | $69,062 | $107,124 | $230,929 |
| Payroll Taxes | $136,710 | $14,963 | $2,493 | $154,166 |
| Occupancy | $107,091 | $11,722 | $1,953 | $120,766 |
| Fees for Services Accounting | $86,708 | $9,491 | $1,581 | $97,780 |
| Depreciation Depletion | $59,291 | $6,490 | $1,081 | $66,862 |
| Advertising | $50,782 | - | $1,163 | $51,945 |
| Office Expenses | $17,190 | $4,538 | - | $21,728 |
| Insurance | $13,696 | $1,499 | $250 | $15,445 |
| Fees for Services Legal | $6,875 | - | - | $6,875 |
| Total Functional Expenses | $4,710,510 | $549,261 | $297,646 | $5,557,417 |
| Line Item | Amount |
|---|---|
| Expenses per Audited Statements | $5,557,417 |
| Total Expenses per Audited Statements | $5,557,417 |
| Total Expenses per Form 990 | $5,557,417 |
| Expenses Not Reported on Financial Statements | $0 |
| Expenses Not Reported on Form 990 | $0 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| Global Pediatric Mds Initiative | Albany, NY | 501(c)(3) | Fair Impact Grant | $58,000 |
| Angioma Alliance | Charlottesville, VA | 501(c)(3) | 2021 Rare Health Equity Impact Grant | $15,000 |
| Cfc International | Delmar, NY | 501(c)(3) | 2021 Rare Health Equity Impact Grant | $15,000 |
| Foundation for Sarcoidosis Research | Chicago, IL | 501(c)(3) | 2021 Rare Health Equity Impact Grant | $15,000 |
| Sickle Cell Assoc of Texas Marc Thomas Fn | Austin, TX | 501(c)(3) | 2021 Rare Health Equity Impact Grant | $15,000 |
| The Akari Foundation | San Antonio, TX | 501(c)(3) | 2021 Rare Health Equity Impact Grant | $15,000 |
| Uplifting Athletes | Doyelstown, PA | 501(c)(3) | 2021 Rare Health Equity Impact Grant | $15,000 |
| Sickle Cells of Illinois | Chicago, IL | 501(c)(3) | 2021 Rare Health Equity Impact Grant | $14,955 |
| National Pku News | Seattle, WA | 501(c)(3) | 2021 Rare Health Equity Impact Grant | $13,000 |
| Ald Alliance | Brooklyn, NY | 501(c)(3) | 2021 Rare Health Equity Impact Grant | $12,200 |
| Bleeding Disorders Alliance of Illinois | Chicago, IL | 501(c)(3) | 2021 Rare Health Equity Impact Grant | $10,000 |
| The Akari Foundation | San Antonio, TX | 501(c)(3) | Fair Impact Grant | $8,000 |
| Angelman Syndrome Foundation | Aurora, IL | 501(c)(3) | Fair Impact Grant | $7,500 |
| Ddx3x Foundation | Wilmington, DE | 501(c)(3) | Fair Impact Grant | $7,500 |
| Dup15q Alliance | Matthews, NC | 501(c)(3) | Fair Impact Grant | $7,500 |
| Rarekc Foundation | Overland Park, KS | 501(c)(3) | Fair Impact Grant | $7,500 |
| The Ewe Foundation | Huntsville, AL | 501(c)(3) | Fair Impact Grant | $7,500 |
| United Mitochondrial Disease Foundation | Pittsburgh, PA | 501(c)(3) | Fair Impact Gramt | $7,500 |
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
| Interested Party | Relationship | Description | Shared Revenue | Amount |
|---|---|---|---|---|
| - | CEO | Consulting Services | No | $360,000 |
“Tim o'connor/npss corporation - husband of kathy o'connor, employee ray soto/npss corporation - ex-husband of kristin soto, employee”
“Line 11b explanation - form 990 is sent to all board of directors members for their review and approval before filing.”
“Board of directors members are required to file a signed conflict of interest agreement annually.”
“Board reviews and approves by vote all other officer's salaries on an annual basis during closed session of the first board of directors meeting of the year board reviews and approves by vote all executive salaries on an annual basis during closed session of the first board of directors meeting of the year”
“The organization makes its governing documents and financial statements available on its own website.”
“There has been no changes to the audit committee.”
“The organization is exempt from federal income taxes under section 501(c)(3) of the internal revenue code (the code) and corresponding state code as a charitable organization whereby only unrelated business income, as identified by section 509(a)(1) of the code, is subject to income tax. The organization had no unrelated business income during the year ended december 31, 2021. Accordingly, no provision for income taxes has been recorded in the accompanying financial statements. The organization adheres to the provisions of fasb asc 740-10-25, accounting for uncertainty in income taxes. In accordance with fasb asc 740-10-25, an organization must recognize the tax benefit associated with tax taken for tax return purposes when it is more likely than not that the position will be sustained. The organization does not believe that there are any material uncertain tax positions, and accordingly, it has not recognized any liability for unrecognized tax benefits or any related interest or penalties. Years prior to 2018 are no longer subject to u.s. Federal income tax examination, and the organization is no longer subject to state income tax examinations for years before 2017.”
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 | 0 |
| IRS990/AccountsPayableAccrExpnssGrp/BOYAmt | 0 | 218299 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 439509 |
| IRS990/AccountsReceivableGrp/BOYAmt | 0 | 44324 |
| IRS990/AccountsReceivableGrp/EOYAmt | 0 | 59565 |
| IRS990/ActivitiesConductedPrtshpInd | 0 | 0 |
| IRS990/ActivityOrMissionDesc | 0 | INCREASE PUBLIC AWARENESS FOR RARE DISEASE AND GLOBALLY CONNECT, EMPOWER AND EDUCATE INDIVIDUALS AND RARE DISEASE FOUNDATIONS IN PERSON, PRINT AND ONLINE. |
| IRS990/AdvertisingGrp/FundraisingAmt | 0 | 1163 |
| IRS990/AdvertisingGrp/ProgramServicesAmt | 0 | 50782 |
| IRS990/AdvertisingGrp/TotalAmt | 0 | 51945 |
| IRS990/AllOtherContributionsAmt | 0 | 4169975 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | 1 |
| IRS990/AuditCommitteeInd | 0 | 1 |
| IRS990/BackupWthldComplianceInd | 0 | 1 |
| IRS990/BooksInCareOfDetail/BusinessName/BusinessNameLine1Txt | 0 | FOHRMAN & FOHRMAN |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 9494580836 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 24551 DEL PRADO 70 |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | DANA POINT |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | CA |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 92629 |
| IRS990/BusinessRlnWith35CtrlEntInd | 0 | 0 |
| IRS990/BusinessRlnWithFamMemInd | 0 | 0 |
| IRS990/BusinessRlnWithOrgMemInd | 0 | 1 |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 842251 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 1236090 |
| IRS990/ChangeToOrgDocumentsInd | 0 | 0 |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 1 |
| IRS990/CollectionsOfArtInd | 0 | 0 |
| IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt | 0 | 10803 |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 131975 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 721500 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 864278 |
| IRS990/CompensationFromOtherSrcsInd | 0 | 0 |
| IRS990/CompensationProcessCEOInd | 0 | 1 |
| IRS990/CompensationProcessOtherInd | 0 | 1 |
| IRS990/ConflictOfInterestPolicyInd | 0 | 1 |
| IRS990/ConservationEasementsInd | 0 | 0 |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | 0 |
| IRS990/ContractorCompensationGrp/CompensationAmt | 0 | 360000 |
| IRS990/ContractorCompensationGrp/CompensationAmt | 1 | 139035 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt | 0 | 54 MORTIN STREET |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt | 1 | 21 KINGSTON RD |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/CityNm | 0 | ANDOVER |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/CityNm | 1 | KESINGTON |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/StateAbbreviationCd | 0 | MA |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/StateAbbreviationCd | 1 | CA |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/ZIPCd | 0 | 01810 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/ZIPCd | 1 | 94707 |
| IRS990/ContractorCompensationGrp/ContractorName/BusinessName/BusinessNameLine1Txt | 0 | RITHM HEALTH |
| IRS990/ContractorCompensationGrp/ContractorName/BusinessName/BusinessNameLine1Txt | 1 | LEVINE MEDIA GROUP |
| IRS990/ContractorCompensationGrp/ServicesDesc | 0 | CONSULTING SERVICES |
| IRS990/ContractorCompensationGrp/ServicesDesc | 1 | EDITORIAL SERVICES |
| IRS990/CreditCounselingInd | 0 | 0 |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 4169975 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 268030 |
| IRS990/CYInvestmentIncomeAmt | 0 | -1882 |
| IRS990/CYOtherExpensesAmt | 0 | 3174164 |
| IRS990/CYOtherRevenueAmt | 0 | 0 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 1715904 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 326580 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 2115223 |
| IRS990/CYTotalExpensesAmt | 0 | 5557417 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 297646 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 5883997 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | 0 |
| IRS990/DeductibleArtContributionInd | 0 | 0 |
| IRS990/DeductibleNonCashContriInd | 0 | 1 |
| IRS990/DeferredRevenueGrp/BOYAmt | 0 | 826214 |
| IRS990/DeferredRevenueGrp/EOYAmt | 0 | 507504 |
| IRS990/DelegationOfMgmtDutiesInd | 0 | 0 |
| IRS990/DepreciationDepletionGrp/FundraisingAmt | 0 | 1081 |
| IRS990/DepreciationDepletionGrp/ManagementAndGeneralAmt | 0 | 6490 |
| IRS990/DepreciationDepletionGrp/ProgramServicesAmt | 0 | 59291 |
| IRS990/DepreciationDepletionGrp/TotalAmt | 0 | 66862 |
| IRS990/Desc | 0 | OUTREACH SERVICESPROVIDE CAPACITY BUILDING EDUCATIONAL AND CONNECTIVE NETWORKING OPPORTUNITIES TO PATIENTS, CAREGIVERS AND DISEASE FOUNDATIONS VIA IN PERSON MEETINGS, PRINT AND ONLINE TOOLS AND ONLINE EDUCATION. |
| IRS990/DescribedInSection501c3Ind | 0 | 1 |
| IRS990/DisregardedEntityInd | 0 | 0 |
| IRS990/DocumentRetentionPolicyInd | 0 | 1 |
| IRS990/DonorAdvisedFundInd | 0 | 0 |
| IRS990/DonorRestrictionNetAssetsGrp/BOYAmt | 0 | 109012 |
| IRS990/DonorRestrictionNetAssetsGrp/EOYAmt | 0 | 0 |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | 0 |
| IRS990/ElectionOfBoardMembersInd | 0 | 0 |
| IRS990/EmployeeCnt | 0 | 31 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | 1 |
| IRS990/EngagedInExcessBenefitTransInd | 0 | 0 |
| IRS990/ExpenseAmt | 0 | 4710510 |
| IRS990/FamilyOrBusinessRlnInd | 0 | 1 |
| IRS990/FederalGrantAuditRequiredInd | 0 | 0 |
| IRS990/FeesForServicesAccountingGrp/FundraisingAmt | 0 | 1581 |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 9491 |
| IRS990/FeesForServicesAccountingGrp/ProgramServicesAmt | 0 | 86708 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 97780 |
| IRS990/FeesForServicesLegalGrp/ProgramServicesAmt | 0 | 6875 |
| IRS990/FeesForServicesLegalGrp/TotalAmt | 0 | 6875 |
| IRS990/ForeignActivitiesInd | 0 | 0 |
| IRS990/ForeignFinancialAccountInd | 0 | 0 |
| IRS990/ForeignOfficeInd | 0 | 0 |
| IRS990/Form8282PropertyDisposedOfInd | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 7 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 8 | 10.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 9 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 10 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 11 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 12 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 13 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 14 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 15 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/HighestCompensatedEmployeeInd | 0 | X |
| 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/IndividualTrusteeOrDirectorInd | 7 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 8 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 9 | X |
| IRS990/Form990PartVIISectionAGrp/KeyEmployeeInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/KeyEmployeeInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 4 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 5 | 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/OtherCompensationAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 14 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 15 | 0 |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 0 | CRAIG MARTIN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | PAM FERRIS |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | CHRISTAIN RUBIO |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | MARY K O'CONNOR |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | MELISSA STRODTBECK TERM 12021 |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | CHRISTOPHER NUNES |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | CAROLINE LOEWY |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | PETER PELLIZZON |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | NICOLE BOICE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | JOHN CROWLEY |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 10 | HUGH HEMPEL |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 11 | NEIL KUMAR |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 12 | BRAD MARGUS |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 13 | CHRISTINA M HARTMAN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 14 | INDU NAVAR |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 15 | KATIE STEVENS |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 360000 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 231888 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 199583 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 3 | 138416 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 4 | 12552 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 5 | 60256 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 14 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 15 | 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/ReportableCompFromRltdOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 14 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 15 | 0 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 0 | CEO |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | VP DEVELOPMENT & MARKETING |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | VP STRATEGIC ADVANCEMENT |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | VP DEVELOPMENT & MARKETING |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | FINANCE DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | FINANCE DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | TREASURER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | BOARD CHAIRMAN |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 8 | FOUNDER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 9 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 10 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 11 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 12 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 13 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 14 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 15 | DIRECTOR |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | 1 |
| IRS990/FormationYr | 0 | 2008 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | 0 |
| IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/FSAuditedInd | 0 | 1 |
| IRS990/FundraisingActivitiesInd | 0 | 0 |
| IRS990/GainOrLossGrp/OtherAmt | 0 | -2822 |
| IRS990/GamingActivitiesInd | 0 | 0 |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 9 |
| IRS990/GrantAmt | 0 | 268030 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 268030 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 268030 |
| IRS990/GrantsToIndividualsInd | 0 | 0 |
| IRS990/GrantsToOrganizationsInd | 0 | 1 |
| IRS990/GrantToRelatedPersonInd | 0 | 0 |
| IRS990/GrossAmountSalesAssetsGrp/OtherAmt | 0 | 25694 |
| IRS990/GrossReceiptsAmt | 0 | 5912513 |
| IRS990/GroupReturnForAffiliatesInd | 0 | 0 |
| IRS990/IncludeFIN48FootnoteInd | 0 | 1 |
| IRS990/IndependentAuditFinclStmtInd | 0 | 1 |
| IRS990/IndependentVotingMemberCnt | 0 | 9 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 4 |
| IRS990/IndoorTanningServicesInd | 0 | 0 |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InfoInScheduleOPartXIIInd | 0 | X |
| IRS990/InformationTechnologyGrp/FundraisingAmt | 0 | 3624 |
| IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt | 0 | 39285 |
| IRS990/InformationTechnologyGrp/ProgramServicesAmt | 0 | 491373 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 534282 |
| IRS990/InsuranceGrp/FundraisingAmt | 0 | 250 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 1499 |
| IRS990/InsuranceGrp/ProgramServicesAmt | 0 | 13696 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 15445 |
| IRS990/InventoriesForSaleOrUseGrp/BOYAmt | 0 | 4299 |
| IRS990/InventoriesForSaleOrUseGrp/EOYAmt | 0 | 1246 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 940 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 940 |
| IRS990/InvestmentInJointVentureInd | 0 | 0 |
| IRS990/IRPDocumentCnt | 0 | 27 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LandBldgEquipAccumDeprecAmt | 0 | 254310 |
| IRS990/LandBldgEquipBasisNetGrp/BOYAmt | 0 | 81077 |
| IRS990/LandBldgEquipBasisNetGrp/EOYAmt | 0 | 11394 |
| IRS990/LandBldgEquipCostOrOtherBssAmt | 0 | 265704 |
| IRS990/LegalDomicileStateCd | 0 | CA |
| IRS990/LessCostOthBasisSalesExpnssGrp/OtherAmt | 0 | 28516 |
| IRS990/LoanOutstandingInd | 0 | 0 |
| IRS990/LobbyingActivitiesInd | 0 | 0 |
| IRS990/LocalChaptersInd | 0 | 0 |
| IRS990/MaterialDiversionOrMisuseInd | 0 | 0 |
| IRS990/MembersOrStockholdersInd | 0 | 0 |
| IRS990/MethodOfAccountingAccrualInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | 1 |
| IRS990/MinutesOfGoverningBodyInd | 0 | 1 |
| IRS990/MissionDesc | 0 | GLOBAL GENES' MISSION IS TO CONNECT, EMPOWER AND INSPIRE THE RARE DISEASE COMMUNITY. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | 0 |
| IRS990/MoreThan5000KToOrgInd | 0 | 0 |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 2042605 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 2368828 |
| IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt | 0 | -2822 |
| IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt | 0 | -2822 |
| IRS990/NetUnrelatedBusTxblIncmAmt | 0 | 0 |
| IRS990/NetUnrlzdGainsLossesInvstAmt | 0 | -357 |
| IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt | 0 | 1933593 |
| IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt | 0 | 2368828 |
| IRS990/NoncashContributionsAmt | 0 | 30000 |
| IRS990/NondeductibleContributionsInd | 0 | 0 |
| IRS990/OccupancyGrp/FundraisingAmt | 0 | 1953 |
| IRS990/OccupancyGrp/ManagementAndGeneralAmt | 0 | 11722 |
| IRS990/OccupancyGrp/ProgramServicesAmt | 0 | 107091 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 120766 |
| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 4538 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 17190 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 21728 |
| IRS990/OfficerMailingAddressInd | 0 | 0 |
| IRS990/OperateHospitalInd | 0 | 0 |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsFASB117Ind | 0 | X |
| IRS990/OtherAssetsTotalGrp/BOYAmt | 0 | 9987 |
| IRS990/OtherAssetsTotalGrp/EOYAmt | 0 | 6576 |
| IRS990/OtherChangesInNetAssetsAmt | 0 | 0 |
| IRS990/OtherExpensesGrp/Desc | 0 | OUTSIDE SERVICES |
| IRS990/OtherExpensesGrp/Desc | 1 | SUPPLIES |
| IRS990/OtherExpensesGrp/Desc | 2 | PROGRAM AWARENESS |
| IRS990/OtherExpensesGrp/Desc | 3 | ALL OTHER EXPENSES |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 110748 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 1 | 32219 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 2 | 107124 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 124682 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 1 | 18977 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 2 | 69062 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 657492 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 448923 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 2 | 384465 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 3 | 54743 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 892922 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 500119 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 384465 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 230929 |
| IRS990/OtherSalariesAndWagesGrp/FundraisingAmt | 0 | 20063 |
| IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt | 0 | 105438 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 971278 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 1096779 |
| IRS990/OwnWebsiteInd | 0 | X |
| IRS990/PartialLiquidationInd | 0 | 0 |
| IRS990/PayrollTaxesGrp/FundraisingAmt | 0 | 2493 |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 14963 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 136710 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 154166 |
| IRS990/PledgesAndGrantsReceivableGrp/BOYAmt | 0 | 109012 |
| IRS990/PledgesAndGrantsReceivableGrp/EOYAmt | 0 | 0 |
| IRS990/PoliticalCampaignActyInd | 0 | 0 |
| IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt | 0 | 302977 |
| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 307820 |
| IRS990/PrincipalOfficerNm | 0 | CRAIG MARTIN |
| IRS990/ProfessionalFundraisingInd | 0 | 0 |
| IRS990/ProgramServiceRevenueGrp/BusinessCd | 0 | 900099 |
| IRS990/ProgramServiceRevenueGrp/BusinessCd | 1 | 900099 |
| IRS990/ProgramServiceRevenueGrp/Desc | 0 | MEMBERSHIP FEES |
| IRS990/ProgramServiceRevenueGrp/Desc | 1 | CONFERENCE SPONSORSHIP |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 0 | 1438904 |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 1 | 277000 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 0 | 1438904 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 1 | 277000 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | 0 |
| IRS990/PYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/PYContributionsGrantsAmt | 0 | 3867120 |
| IRS990/PYExcessBenefitTransInd | 0 | 0 |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 603390 |
| IRS990/PYInvestmentIncomeAmt | 0 | 11307 |
| IRS990/PYOtherExpensesAmt | 0 | 1954972 |
| IRS990/PYOtherRevenueAmt | 0 | 0 |
| IRS990/PYProgramServiceRevenueAmt | 0 | 1688650 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 400652 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 2608063 |
| IRS990/PYTotalExpensesAmt | 0 | 5166425 |
| IRS990/PYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/PYTotalRevenueAmt | 0 | 5567077 |
| IRS990/QuidProQuoContributionsInd | 0 | 0 |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 326580 |
| IRS990/RegularMonitoringEnfrcInd | 0 | 1 |
| IRS990/RelatedEntityInd | 0 | 0 |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | 0 |
| IRS990/ReportInvestmentsOtherSecInd | 0 | 0 |
| IRS990/ReportLandBuildingEquipmentInd | 0 | 1 |
| IRS990/ReportOtherAssetsInd | 0 | 0 |
| IRS990/ReportOtherLiabilitiesInd | 0 | 0 |
| IRS990/ReportProgramRelatedInvstInd | 0 | 0 |
| IRS990/RevenueAmt | 0 | 1715904 |
| IRS990/SavingsAndTempCashInvstGrp/BOYAmt | 0 | 1693191 |
| IRS990/SavingsAndTempCashInvstGrp/EOYAmt | 0 | 1693150 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt | 0 | 4169975 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt | 0 | 3581873 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 5297898 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 4955803 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 4076960 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt | 0 | 22082509 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt | 0 | 940 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt | 0 | 11307 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 23101 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 1250 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt | 0 | 36598 |
| IRS990ScheduleA/PublicOrganization170Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY170Pct | 0 | 0.80790 |
| IRS990ScheduleA/PublicSupportPY170Pct | 0 | 0.86120 |
| IRS990ScheduleA/PublicSupportTotal170Amt | 0 | 17870480 |
| IRS990ScheduleA/SubstantialContributorsTotAmt | 0 | 4212029 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind | 0 | X |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt | 0 | 4169975 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt | 0 | 3581873 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 5297898 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 4955803 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 4076960 |
| IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt | 0 | 22082509 |
| IRS990ScheduleA/TotalSupportAmt | 0 | 22119107 |
| 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 | 1 |
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Displayed year
2021 • Form 990Detailed filing. Detailed filing data is available for this year.