Civic Intelligence

The American Porphyrias Expert Collaborative Inc

EIN 84-4857909 • 501(c)3 • Bethesda, MD

Profile

To promote and carry out research, and promote educational activities, regarding porphyrias and heme biosynthesis through development of best practices, research support, and education.

4800 Hampden Boulevard Ste 200Bethesda, MD 20817

www.apexcollaborative.com

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

19th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Liabilities / Revenue

20th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Net Margin

97th percentile

87%

Higher net margin than 97% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Top Officer Pay

40th percentile

$0

Higher top officer pay than 40% of similar nonprofits.

Top officer pay equals 0.0% of source-year revenue.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Asset Growth

99th percentile

863%

Faster asset growth than 99% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Revenue Growth

100th percentile

2659%

Faster revenue growth than 100% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets19th percentile

Assets

Up

$2,242,070

Up $2,009,349 (+863%) from 2023

Liabilities

Flat

$0

Flat from 2023

Net Assets

$2,242,070

No earlier filing loaded for comparison.

Operations
Liabilities / Revenue20th percentileNet Margin97th percentile

Revenue

Up

$2,305,739

Up $2,222,165 (+2659%) from 2023

Expenses

Up

$296,390

Up $218,954 (+283%) from 2023

Net Income

Up

$2,009,349

Up $2,003,211 (+32636%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth99th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$3.0M$2.0M$1.0M$0Assets 2021: $150,544Liabilities 2021: $0Net Assets 2021: $150,5442021Assets 2022: $226,583Liabilities 2022: $0Net Assets 2022: $226,5832022Assets 2023: $232,721Liabilities 2023: $02023Assets 2024: $2,242,070Liabilities 2024: $0Net Assets 2024: $2,242,0702024

Highlighted filing

2024

Assets$2,242,070
Liabilities$0
Net Assets$2,242,070
Open 2024 Filing

Operations Trend

Revenue Growth100th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$3.0M$2.0M$1.0M$0Revenue 2021: $172,291Expenses 2021: $47,837Net Income 2021: $124,4542021Revenue 2022: $304,432Expenses 2022: $228,393Net Income 2022: $76,0392022Revenue 2023: $83,574Expenses 2023: $77,436Net Income 2023: $6,1382023Revenue 2024: $2,305,739Expenses 2024: $296,390Net Income 2024: $2,009,3492024

Highlighted filing

2024

Revenue$2,305,739
Expenses$296,390
Net Income$2,009,349
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Facts available. Structured filing facts are available, but richer extracted sections are limited.

Open filing
Assets
$2,242,070
Liabilities
$0
Net assets
$2,242,070
Revenue
$2,305,739
Expenses
$296,390
Net income
$2,009,349
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.24$0.00$2.24$2.31$0.30$2.01
2023Summary only. Only limited summary data is available for this year.$0.23$0.00$0.08$0.08$0.01
2022Detailed filing. Detailed filing data is available for this year.$0.23$0.00$0.23$0.30$0.23$0.08
2021Detailed filing. Detailed filing data is available for this year.$0.15$0.00$0.15$0.17$0.05$0.12
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Nov 14, 2025
Return Version
2024v5.2
Gross Receipts
$2,305,739
Mission and Program Overview

Mission

To promote and carry out research, and promote educational activities, regarding Porphyrias and heme biosynthesis through development of best practices, research support and education.

To promote and carry out research, and promote educational activities, regarding porphyrias and heme biosynthesis through development of best practices, research support, and education.

Balance Sheet Detail
LineBeginningEndChange
Assets
Rtn Earn Endowment Incm Other Fnds$232,721$2,242,070▲ $2,009,349
Savings and Temporary Cash Investments-$1,285,865-
Cash and Non-Interest-Bearing Accounts$232,721$956,205▲ $723,484
Accounts Receivable-$0-
Other Notes and Loans Receivable, Net-$0-
Pledges and Grants Receivable-$0-
Receivable From Disqualified Prsn-$0-
Receivables From Officers Etc-$0-
Investments Other Securities-$0-
Investments Program Related-$0-
Investments in Publicly Traded Securities-$0-
Land, Buildings, and Equipment, Net-$0-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Prepaid Expenses and Deferred Charges-$0-
Total Assets$232,721$2,242,070▲ $2,009,349
Other Assets Total-$0-
Liabilities
Total Liabilities$0$0→ $0
Net Assets / Fund Balance
Total Net Assets Fund Balance$232,721$2,242,070▲ $2,009,349
Total Liabilities and Net Assets / Fund Balance$232,721$2,242,070▲ $2,009,349
Compensation and Service Providers
Top Officer Pay40th percentile

Board Members and Trustees

NameTitle
Robert DesnickPresident
John PhillipsVice President
Brendan McguireDirector
Bruce Wang MdDirector
Herbert BonkovskyDirector
Karl AndersonDirector
Manisha BaldwaniDirector
Richard BissellDirector
Kristen WheedenSecretary-treas
Revenue and Support

Revenue Composition

Contributions and Grants
$2,267,400
Program Service Revenue
$0
Investment Income
$38,339
Other Revenue
$0
All Other Contributions
$2,262,300
Change in Net Assets
$2,009,349
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$275,000
Other Expenses$21,390
Professional Fundraising Fees$0
Salaries, Compensation, and Employee Benefits$0
Total Fundraising Expense$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$275,000--$275,000
Fees for Services Legal-$12,876-$12,876
Conferences and Meetings-$6,354-$6,354
Insurance-$1,449-$1,449
Other Expenses-$563-$563
Fees for Services Other-$148-$148
Total Functional Expenses$275,000$21,390$0$296,390
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
UcsfSan Francisco, CA-Support Heme Biosynthesis Research$150,000
Mass General HospitalBoston, MA-Support Heme Biosynthesis Research$50,000
StanfordStanford, CA-Support Heme Biosynthesis Research$50,000
Mount Sinai School of MedicinNew York, NY-Support Heme Biosynthesis Research$25,000
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$0-
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Backup withholding compliance
No
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
No
Other officer compensation reviewed
No
Conflict-of-interest policy
No
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section B, Line 11B

“No review was or will be conducted.”

Form 990, Part VI, Section C, Line 19

“No documents available to the public.”

Filing and Contact Details

Filer

Filer Name
The American Porphyrias Expert
EIN
84-4857909
Phone
2404886616
Address
4800 Hampden Boulevard Ste 200, BETHESDA, MD 20817

Signing Officer

Name
Kristen Wheeden
Title
Secretary-treasurer
Signed
2025-11-14
Discuss with paid preparer
Yes

Organization Details

Formed
2020
Legal Domicile
Md
Voting Board Members
9
Independent Board Members
9
Employees
0

Preparer

Firm
WestRock Tax & Consulting
Address
100 Dutch Hill Rd Ste 210, Orangeburg, NY 10962
Preparer
Joel E Rosenberg CPA
Phone
8456248071
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IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt02690303
IRS990ScheduleA/GovtFurnSrvcFcltsVl170Grp/TotalAmt00
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt00
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearAmt038339
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus3YearsAmt013568
IRS990ScheduleA/OtherIncome170Grp/TotalAmt051907
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.00000
IRS990ScheduleA/PublicSupportTotal170Amt02690303
IRS990ScheduleA/SubstantialContributorsTotAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft170Grp/TotalAmt00
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt02139650
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt033574
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt0304432
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt0158723
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt053924
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt02690303
IRS990ScheduleA/TotalSupportAmt02742210
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/TotalAmt00
IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorNum0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine20RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt0RESTRICTED
IRS990/ScheduleBRequiredInd0true
IRS990ScheduleI/GrantRecordsMaintainedInd0false
IRS990ScheduleI/RecipientTable/CashGrantAmt050000
IRS990ScheduleI/RecipientTable/CashGrantAmt125000
IRS990ScheduleI/RecipientTable/CashGrantAmt250000
IRS990ScheduleI/RecipientTable/CashGrantAmt3150000
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt00
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt10
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt20
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt30
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt0SUPPORT HEME BIOSYNTHESIS RESEARCH
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt1SUPPORT HEME BIOSYNTHESIS RESEARCH
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt2SUPPORT HEME BIOSYNTHESIS RESEARCH
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt3SUPPORT HEME BIOSYNTHESIS RESEARCH
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt0MASS GENERAL HOSPITAL
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt1MOUNT SINAI SCHOOL OF MEDICIN
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt2STANFORD
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt3UCSF
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt055 FRUIT ST
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt11 Gustave L Levy Pl
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt2450 JANE STANFORD WAY
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt3505 PARNASUS AVE
IRS990ScheduleI/RecipientTable/USAddress/CityNm0BOSTON
IRS990ScheduleI/RecipientTable/USAddress/CityNm1NEW YORK
IRS990ScheduleI/RecipientTable/USAddress/CityNm2STANFORD
IRS990ScheduleI/RecipientTable/USAddress/CityNm3SAN FRANCISCO
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd0MA
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd1NY
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd2CA
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd3CA
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd002114
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd110029
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd294305
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd394143
IRS990ScheduleI/Total501c3OrgCnt00
IRS990ScheduleI/TotalOtherOrgCnt04
IRS990/ScheduleJRequiredInd0false
IRS990/ScheduleORequiredInd0true
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0No review was or will be conducted.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1No documents available to the public.
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0Form 990, Part VI, Section B, Line 11b
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1Form 990, Part VI, Section C, Line 19
IRS990ScheduleR/AssetExchangeInd0false
IRS990ScheduleR/AssetPurchaseFromOtherOrgInd0false
IRS990ScheduleR/AssetSaleToOtherOrgInd0false
IRS990ScheduleR/DivRelatedOrganizationInd0false
IRS990ScheduleR/GiftGrntCapContriFromOthOrgInd0false
IRS990ScheduleR/GiftGrntOrCapContriToOthOrgInd0false
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/ControlledOrganizationInd0false
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/DirectControllingNACd0N/A
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/DisregardedEntityName/BusinessNameLine1Txt0UNITED PORPHYRIAS ASSOCIATION
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/ExemptCodeSectionTxt0501(c)(3)
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/LegalDomicileStateCd0MD
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/PrimaryActivitiesTxt0DISEASE AWARENESS, RESEARCH
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/USAddress/AddressLine1Txt04800 HAMPDEN LN
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/USAddress/CityNm0BETHESDA
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/USAddress/StateAbbreviationCd0MD
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/USAddress/ZIPCd020814
IRS990ScheduleR/LoansOrGuaranteesFromOthOrgInd0false
IRS990ScheduleR/LoansOrGuaranteesToOtherOrgInd0false
IRS990ScheduleR/PaidEmployeesSharingInd0false
IRS990ScheduleR/PerformOfServicesByOtherOrgInd0false
IRS990ScheduleR/PerformOfServicesForOthOrgInd0false
IRS990ScheduleR/ReceiptOfIntAnntsRntsRyltsInd0false
IRS990ScheduleR/ReimbursementPaidByOtherOrgInd0false
IRS990ScheduleR/ReimbursementPaidToOtherOrgInd0false
IRS990ScheduleR/RentalOfFacilitiesToOthOrgInd0false
IRS990ScheduleR/RentalOfFcltsFromOthOrgInd0false
IRS990ScheduleR/SharingOfFacilitiesInd0false
IRS990ScheduleR/TransferFromOtherOrgInd0false
IRS990ScheduleR/TransferToOtherOrgInd0false
IRS990/SchoolOperatingInd0false
IRS990/SignificantChangeInd0false
IRS990/SignificantNewProgramSrvcInd0false
IRS990/StatesWhereCopyOfReturnIsFldCd0MD
IRS990/SubjectToExcsTaxNetInvstIncInd0false
IRS990/SubjectToProxyTaxInd0false
IRS990/SubjToTaxRmnrtnExPrchtPymtInd0false
IRS990/TaxablePartyNotificationInd0false
IRS990/TaxExemptBondsInd0false
IRS990/TerminateOperationsInd0false
IRS990/TotalAssetsBOYAmt0232721
IRS990/TotalAssetsEOYAmt02242070
IRS990/TotalAssetsGrp/BOYAmt0232721
IRS990/TotalAssetsGrp/EOYAmt02242070
IRS990/TotalCompGreaterThan150KInd0false
IRS990/TotalContributionsAmt02267400
IRS990/TotalEmployeeCnt00
IRS990/TotalFunctionalExpensesGrp/FundraisingAmt00
IRS990/TotalFunctionalExpensesGrp/ManagementAndGeneralAmt021390
IRS990/TotalFunctionalExpensesGrp/ProgramServicesAmt0275000
IRS990/TotalFunctionalExpensesGrp/TotalAmt0296390
IRS990/TotalGrossUBIAmt00
IRS990/TotalLiabilitiesEOYAmt00
IRS990/TotalLiabilitiesGrp/BOYAmt00
IRS990/TotalLiabilitiesGrp/EOYAmt00
IRS990/TotalNetAssetsFundBalanceGrp/BOYAmt0232721
IRS990/TotalNetAssetsFundBalanceGrp/EOYAmt02242070
IRS990/TotalProgramServiceExpensesAmt0275000
IRS990/TotalProgramServiceRevenueAmt00
IRS990/TotalRevenueGrp/ExclusionAmt038339
IRS990/TotalRevenueGrp/TotalRevenueColumnAmt02305739
IRS990/TotLiabNetAssetsFundBalanceGrp/BOYAmt0232721
IRS990/TotLiabNetAssetsFundBalanceGrp/EOYAmt02242070
IRS990/TravelGrp/TotalAmt00
IRS990/TrnsfrExmptNonChrtblRltdOrgInd0false
IRS990/TypeOfOrganizationCorpInd0X

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