Civic Intelligence

The Orphan Disease Pathway Project

EIN 27-3862623 • 501(c)3 • Rocky Hill, CT

Profile

The organization is working towards helping find cures and/or effective treatments for orphan (rare) diseases, and to facilitate research of such diseases.

400 Capital Boulevard Suite 201Rocky Hill, CT 06067

www.orphandiseasepathwayproject.org

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

99th percentile

100%

Higher net margin than 99% 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

495%

Faster asset growth than 99% of similar nonprofits.

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

Revenue Growth

98th percentile

553%

Faster revenue growth than 98% of similar nonprofits.

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

Assets

Up

$1,252,080

Up $1,172,700 (+1477%) from 2022

Liabilities

Down

$0

Down $23,500 (-100%) from 2022

Net Assets

Up

$1,252,080

Up $1,196,200 (+2141%) from 2022

Revenue

Down

$1,045,050

Down $657,589 (-39%) from 2022

Expenses

Down

$3,460

Down $2,181,810 (-100%) from 2022

Net Income

Up

$1,041,590

Up $1,524,221 (+316%) from 2022

Trend Graphs

Balance Sheet Trend

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

$1.5M$1.0M$500K$0Assets 2013: $120,222Liabilities 2013: $0Net Assets 2013: $120,2222013Assets 2014: $31,139Liabilities 2014: $0Net Assets 2014: $31,1392014Assets 2015: $153,857Liabilities 2015: $107,625Net Assets 2015: $46,2322015Assets 2016: $160,569Liabilities 2016: $19,000Net Assets 2016: $141,5692016Assets 2017: $270,642Liabilities 2017: $0Net Assets 2017: $270,6422017Assets 2018: $453,607Liabilities 2018: $20,000Net Assets 2018: $433,6072018Assets 2019: $600,115Liabilities 2019: $0Net Assets 2019: $600,1152019Assets 2020: $356,177Liabilities 2020: $23,600Net Assets 2020: $332,5772020Assets 2022: $79,380Liabilities 2022: $23,500Net Assets 2022: $55,8802022Assets 2024: $1,252,080Liabilities 2024: $0Net Assets 2024: $1,252,0802024

Highlighted filing

2024

Assets$1,252,080
Liabilities$0
Net Assets$1,252,080

Operations Trend

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

$3.0M$2.0M$1.0M$0-$1.0MRevenue 2013: $125,786Expenses 2013: $11,096Net Income 2013: $114,6902013Revenue 2014: $858,974Expenses 2014: $948,057Net Income 2014: -$89,0832014Revenue 2015: $36,185Expenses 2015: $21,092Net Income 2015: $15,0932015Revenue 2016: $1,489,353Expenses 2016: $1,464,266Net Income 2016: $25,0872016Revenue 2017: $130,501Expenses 2017: $1,428Net Income 2017: $129,0732017Revenue 2018: $2,712,042Expenses 2018: $2,536,076Net Income 2018: $175,9662018Revenue 2019: $170,603Expenses 2019: $4,095Net Income 2019: $166,5082019Revenue 2020: $1,479,904Expenses 2020: $1,734,442Net Income 2020: -$254,5382020Revenue 2022: $1,702,639Expenses 2022: $2,185,270Net Income 2022: -$482,6312022Revenue 2024: $1,045,050Expenses 2024: $3,460Net Income 2024: $1,041,5902024

Highlighted filing

2024

Revenue$1,045,050
Expenses$3,460
Net Income$1,041,590

Filings

Latest Detailed Filing

The latest 2024 filing currently has linked XML that has not been fully parsed yet. Showing the latest detailed filing from 2022 below.

Jump To
Filing Snapshot
Filing Period
Jan 1, 2022 to Dec 31, 2022
Signed
Nov 15, 2023
Return Version
2022v5.0
Gross Receipts
$1,884,842
Mission and Program Overview

Mission

The organization is working towards helping find cures and/or effective treatments for orphan (rare) diseases, and to facilitate research of such diseases.

See part iii, line 1 for description

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$533,529$74,655▼ $458,874
Savings and Temporary Cash Investments$4,982$4,725▼ $257
Total Assets$538,511$79,380▼ $459,131
Liabilities
Accounts Payable and Accrued Expenses-$23,500-
Total Liabilities$0$23,500▲ $23,500
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$538,511$55,880▼ $482,631
Total Net Assets Fund Balance$538,511$55,880▼ $482,631
Total Liabilities and Net Assets / Fund Balance$538,511$79,380▼ $459,131
Compensation and Service Providers

Board Members and Trustees

NameTitle
George a WeissTrustee
Revenue and Support

Revenue Composition

Contributions and Grants
$750,561
Program Service Revenue
$0
Investment Income
$109
Other Revenue
$951,969
All Other Contributions
$90,450
Change in Net Assets
$-482,631

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,702,639
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$137,203
Total Revenue per Audited Statements
$1,839,842
Total Revenue per Form 990
$1,702,639
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$2,150,000
Other Expenses$35,270
Professional Fundraising Fees$0
Salaries, Compensation, and Employee Benefits$0
Total Fundraising Expense$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$2,150,000--$2,150,000
Fees for Services Accounting-$26,000-$26,000
Fees for Services Other-$9,091-$9,091
Other Expenses-$4-$4
Total Functional Expenses$2,150,000$35,270$0$2,185,270

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,322,473
Expenses per Audited Statements$2,185,270
Total Expenses per Form 990$2,185,270
Expenses Not Reported on Form 990$137,203
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of PennsylvaniaPhiladelphia, PA501(c)(3)The Penn Center for Orphan Disease$2,150,000
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
Yes

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$1,134,172
Fundraising Direct Expenses$182,203
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Benefit Dinner$1,794,283$1,134,172$88,535$1,045,637
Total Events$1,794,283$1,134,172$182,203$951,969
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
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
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 8A

The organization is a trust that is managed by one trustee. Therefore, no meetings or written actions were held or undertaken.

Form 990, Part VI, Section A, Line 8B

The organization is a trust that is managed by one trustee. Therefore, no meetings or written actions were held or undertaken.

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

The organization will provide the sole trustee of the organization a copy of the form 990 for review before it is filed.

Form 990, Part VI, Section B, Line 12C

The organization is a trust managed by one trustee. The trustee at all times endeavors to avoid any conflict between their own personal or professional interests and the interests of the organization when taking any action on behalf of the organization.

Form 990, Part VI, Section C, Line 19

All governing documents of the organization are available to the public upon request. The public can utilize the contact information provided in section c to request this information.

Filing and Contact Details

Filer

Filer Name
The Orphan Disease Pathway Project
EIN
27-3862623
Phone
8602408900
Address
400 CAPITAL BOULEVARD SUITE 201, ROCKY HILL, CT 06067

Signing Officer

Name
George a Weiss
Title
Trustee
Phone
8602408900
Signed
2023-11-15
Discuss with paid preparer
Yes

Organization Details

Principal Officer
George a Weiss
Formed
2010
Legal Domicile
Ct
Voting Board Members
1
Independent Board Members
1
Employees
0
Volunteers
0

Preparer

Firm
Cliftonlarsonallen Llp
Address
293 EISENHOWER PARKWAY 2ND FLOOR, LIVINGSTON, NJ 07039
Preparer
Robert Siegel
Phone
9739949494
Supplemental Narrative

Financial Statement Notes

PART XI, LINE 2D - OTHER ADJUSTMENTS:

Gross income from fundraiser 137,203.

PART XII, LINE 2D - OTHER ADJUSTMENTS:

Direct costs of fundraiser 137,203.

Raw XML AppendixShowing 400 of 404 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990ScheduleI/RecipientTable/USAddress/ZIPCd0191046205
IRS990ScheduleI/RecipientTable/ValuationMethodUsedDesc0BOOK
IRS990ScheduleI/SupplementalInformationDetail/ExplanationTxt0THE ORGANIZATION HAS A PLEDGE AGREEMENT WITH THE PENN CENTER FOR ORPHAN DISEASE RESEARCH AND THERAPY AT THE SCHOOL OF MEDICINE AT THE UNIVERSITY OF PENNSYLVANIA.
IRS990ScheduleI/SupplementalInformationDetail/FormAndLineReferenceDesc0PART 1, LINE 2:
IRS990ScheduleI/Total501c3OrgCnt01
IRS990/ScheduleJRequiredInd00
IRS990/ScheduleORequiredInd01
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0THE ORGANIZATION IS A TRUST THAT IS MANAGED BY ONE TRUSTEE. THEREFORE, NO MEETINGS OR WRITTEN ACTIONS WERE HELD OR UNDERTAKEN.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1THE ORGANIZATION IS A TRUST THAT IS MANAGED BY ONE TRUSTEE. THEREFORE, NO MEETINGS OR WRITTEN ACTIONS WERE HELD OR UNDERTAKEN.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2THE ORGANIZATION WILL PROVIDE THE SOLE TRUSTEE OF THE ORGANIZATION A COPY OF THE FORM 990 FOR REVIEW BEFORE IT IS FILED.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3THE ORGANIZATION IS A TRUST MANAGED BY ONE TRUSTEE. THE TRUSTEE AT ALL TIMES ENDEAVORS TO AVOID ANY CONFLICT BETWEEN THEIR OWN PERSONAL OR PROFESSIONAL INTERESTS AND THE INTERESTS OF THE ORGANIZATION WHEN TAKING ANY ACTION ON BEHALF OF THE ORGANIZATION.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4ALL GOVERNING DOCUMENTS OF THE ORGANIZATION ARE AVAILABLE TO THE PUBLIC UPON REQUEST. THE PUBLIC CAN UTILIZE THE CONTACT INFORMATION PROVIDED IN SECTION C TO REQUEST THIS INFORMATION.
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0FORM 990, PART VI, SECTION A, LINE 8A
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1FORM 990, PART VI, SECTION A, LINE 8B
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2FORM 990, PART VI, SECTION B, LINE 11B
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3FORM 990, PART VI, SECTION B, LINE 12C
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc4FORM 990, PART VI, SECTION C, LINE 19
IRS990ScheduleR/AssetExchangeInd00
IRS990ScheduleR/AssetPurchaseFromOtherOrgInd00
IRS990ScheduleR/AssetSaleToOtherOrgInd00
IRS990ScheduleR/DivRelatedOrganizationInd00
IRS990ScheduleR/GiftGrntCapContriFromOthOrgInd00
IRS990ScheduleR/GiftGrntOrCapContriToOthOrgInd00
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/ControlledOrganizationInd00
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/DirectControllingNACd0N/A
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/DisregardedEntityName/BusinessNameLine1Txt0WEISS FAMILY FOUNDATION
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/EIN0208916545
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/ExemptCodeSectionTxt0501(C)(3)
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/LegalDomicileStateCd0CT
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/PrimaryActivitiesTxt0PRIVATE FOUNDATION
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/PublicCharityStatusTxt0PF
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/USAddress/AddressLine1Txt0400 CAPITAL BOULEVARD SUITE 201
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/USAddress/CityNm0ROCKY HILL
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/USAddress/StateAbbreviationCd0CT
IRS990ScheduleR/IdRelatedTaxExemptOrgGrp/USAddress/ZIPCd006067
IRS990ScheduleR/LoansOrGuaranteesFromOthOrgInd00
IRS990ScheduleR/LoansOrGuaranteesToOtherOrgInd00
IRS990ScheduleR/PaidEmployeesSharingInd00
IRS990ScheduleR/PerformOfServicesByOtherOrgInd00
IRS990ScheduleR/PerformOfServicesForOthOrgInd00
IRS990ScheduleR/ReceiptOfIntAnntsRntsRyltsInd00
IRS990ScheduleR/ReimbursementPaidByOtherOrgInd00
IRS990ScheduleR/ReimbursementPaidToOtherOrgInd00
IRS990ScheduleR/RentalOfFacilitiesToOthOrgInd00
IRS990ScheduleR/RentalOfFcltsFromOthOrgInd00
IRS990ScheduleR/SharingOfFacilitiesInd00
IRS990ScheduleR/TransferFromOtherOrgInd00
IRS990ScheduleR/TransferToOtherOrgInd00
IRS990/SchoolOperatingInd00
IRS990/SignificantChangeInd00
IRS990/SignificantNewProgramSrvcInd00
IRS990/StatesWhereCopyOfReturnIsFldCd0CT
IRS990/StatesWhereCopyOfReturnIsFldCd1NY
IRS990/SubjectToExcsTaxNetInvstIncInd00
IRS990/SubjectToProxyTaxInd00
IRS990/SubjToTaxRmnrtnExPrchtPymtInd00
IRS990/TaxablePartyNotificationInd00
IRS990/TaxExemptBondsInd00
IRS990/TerminateOperationsInd00
IRS990/TotalAssetsBOYAmt0538511
IRS990/TotalAssetsEOYAmt079380
IRS990/TotalAssetsGrp/BOYAmt0538511
IRS990/TotalAssetsGrp/EOYAmt079380
IRS990/TotalCompGreaterThan150KInd00
IRS990/TotalContributionsAmt0750561
IRS990/TotalEmployeeCnt00
IRS990/TotalFunctionalExpensesGrp/FundraisingAmt00
IRS990/TotalFunctionalExpensesGrp/ManagementAndGeneralAmt035270
IRS990/TotalFunctionalExpensesGrp/ProgramServicesAmt02150000
IRS990/TotalFunctionalExpensesGrp/TotalAmt02185270
IRS990/TotalGrossUBIAmt00
IRS990/TotalLiabilitiesBOYAmt00
IRS990/TotalLiabilitiesEOYAmt023500
IRS990/TotalLiabilitiesGrp/BOYAmt00
IRS990/TotalLiabilitiesGrp/EOYAmt023500
IRS990/TotalNetAssetsFundBalanceGrp/BOYAmt0538511
IRS990/TotalNetAssetsFundBalanceGrp/EOYAmt055880
IRS990/TotalOtherCompensationAmt00
IRS990/TotalProgramServiceExpensesAmt02150000
IRS990/TotalReportableCompFromOrgAmt00
IRS990/TotalRevenueGrp/ExclusionAmt0952078
IRS990/TotalRevenueGrp/RelatedOrExemptFuncIncomeAmt00
IRS990/TotalRevenueGrp/TotalRevenueColumnAmt01702639
IRS990/TotalRevenueGrp/UnrelatedBusinessRevenueAmt00
IRS990/TotalVolunteersCnt00
IRS990/TotLiabNetAssetsFundBalanceGrp/BOYAmt0538511
IRS990/TotLiabNetAssetsFundBalanceGrp/EOYAmt079380
IRS990/TotReportableCompRltdOrgAmt00
IRS990/TrnsfrExmptNonChrtblRltdOrgInd00
IRS990/TypeOfOrganizationTrustInd0X
IRS990/UnrelatedBusIncmOverLimitInd00
IRS990/UponRequestInd0X
IRS990/USAddress/AddressLine1Txt07252 FISHER ISLAND DRIVE
IRS990/USAddress/CityNm0FISHER ISLAND
IRS990/USAddress/StateAbbreviationCd0FL
IRS990/USAddress/ZIPCd033109
IRS990/VotingMembersGoverningBodyCnt01
IRS990/VotingMembersIndependentCnt01
IRS990/WebsiteAddressTxt0WWW.ORPHANDISEASEPATHWAYPROJECT.ORG
IRS990/WhistleblowerPolicyInd00
ReturnHeader/AdditionalFilerInformation/TrustedCustomerGrp/AuthenticationAssuranceLevelCd0AAL1
ReturnHeader/AdditionalFilerInformation/TrustedCustomerGrp/IdentityAssuranceLevelCd0IAL1
ReturnHeader/AdditionalFilerInformation/TrustedCustomerGrp/TrustedCustomerCd03
ReturnHeader/BuildTS02023-04-26 12:10:37Z
ReturnHeader/BusinessOfficerGrp/DiscussWithPaidPreparerInd01
ReturnHeader/BusinessOfficerGrp/PersonNm0GEORGE A WEISS
ReturnHeader/BusinessOfficerGrp/PersonTitleTxt0TRUSTEE
ReturnHeader/BusinessOfficerGrp/PhoneNum08602408900
ReturnHeader/BusinessOfficerGrp/SignatureDt02023-11-15
ReturnHeader/Filer/BusinessName/BusinessNameLine1Txt0THE ORPHAN DISEASE PATHWAY PROJECT
ReturnHeader/Filer/BusinessNameControlTxt0ORPH
ReturnHeader/Filer/EIN0273862623
ReturnHeader/Filer/PhoneNum08602408900
ReturnHeader/Filer/USAddress/AddressLine1Txt0400 CAPITAL BOULEVARD SUITE 201
ReturnHeader/Filer/USAddress/CityNm0ROCKY HILL
ReturnHeader/Filer/USAddress/StateAbbreviationCd0CT
ReturnHeader/Filer/USAddress/ZIPCd006067
ReturnHeader/IRSResponsiblePrtyInfoCurrInd00
ReturnHeader/PreparerFirmGrp/PreparerFirmEIN0410746749
ReturnHeader/PreparerFirmGrp/PreparerFirmName/BusinessNameLine1Txt0CLIFTONLARSONALLEN LLP
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/AddressLine1Txt0293 EISENHOWER PARKWAY 2ND FLOOR
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/CityNm0LIVINGSTON
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/StateAbbreviationCd0NJ
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/ZIPCd007039
ReturnHeader/PreparerPersonGrp/PhoneNum09739949494
ReturnHeader/PreparerPersonGrp/PreparationDt02023-11-15
ReturnHeader/PreparerPersonGrp/PreparerPersonNm0ROBERT SIEGEL
ReturnHeader/ReturnTs02023-11-15T18:36:35-06:00
ReturnHeader/ReturnTypeCd0990
ReturnHeader/SigningOfficerGrp/PersonFullName/PersonFirstNm0GEORGE

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