Civic Intelligence

Rare Disease Company Coalition Inc

EIN 86-2999172 • 501(c)6 • Washington, DC

Profile

The mission of the rare disease company coalition is to stimulate development of and access to rare disease treatments.

200 Massachusetts Avenue NWWashington, DC 20001

www.rarecoalition.com

Siviq Scores

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

Liabilities / Assets

95th percentile

0.84x

Higher debt load relative to assets than 95% of similar nonprofits.

501(c)6 • $1M-$5M nonprofits • Source year 2024

Liabilities / Revenue

98th percentile

1.93x

Higher debt load relative to revenue than 98% of similar nonprofits.

501(c)6 • $1M-$5M nonprofits • Source year 2024

Net Margin

2nd percentile

-60%

Higher net margin than 2% of similar nonprofits.

501(c)6 • $1M-$5M nonprofits • Source year 2024

Top Officer Pay

30th percentile

$0

Higher top officer pay than 30% of similar nonprofits.

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

501(c)6 • $1M-$5M nonprofits • Source year 2024

Asset Growth

98th percentile

136%

Faster asset growth than 98% of similar nonprofits.

501(c)6 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Revenue Growth

3rd percentile

-38%

Faster revenue growth than 3% of similar nonprofits.

501(c)6 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Assets

Up

$1,372,157

Up $790,281 (+136%) from 2023

Liabilities

Up

$1,148,774

Up $1,148,774 from 2023

Net Assets

Down

$223,383

Down $358,493 (-62%) from 2023

Revenue

Down

$595,425

Down $363,075 (-38%) from 2023

Expenses

Up

$953,918

Up $100,120 (+12%) from 2023

Net Income

Down

-$358,493

Down $463,195 (-442%) from 2023

Trend Graphs

Balance Sheet Trend

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

$1.5M$1.0M$500K$0Assets 2021: $91,152Liabilities 2021: $0Net Assets 2021: $91,1522021Assets 2022: $477,461Liabilities 2022: $286Net Assets 2022: $477,1752022Assets 2023: $581,876Liabilities 2023: $0Net Assets 2023: $581,8762023Assets 2024: $1,372,157Liabilities 2024: $1,148,774Net Assets 2024: $223,3832024

Highlighted filing

2024

Assets$1,372,157
Liabilities$1,148,774
Net Assets$223,383

Operations Trend

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

$1.5M$1.0M$500K$0-$500KRevenue 2021: $401,249Expenses 2021: $310,097Net Income 2021: $91,1522021Revenue 2022: $1,117,083Expenses 2022: $731,060Net Income 2022: $386,0232022Revenue 2023: $958,500Expenses 2023: $853,798Net Income 2023: $104,7022023Revenue 2024: $595,425Expenses 2024: $953,918Net Income 2024: -$358,4932024

Highlighted filing

2024

Revenue$595,425
Expenses$953,918
Net Income-$358,493

Filings

Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Jul 29, 2025
Return Version
2024v5.2
Gross Receipts
$595,425
Mission and Program Overview

Mission

The Coalition operates exclusively to promote the common business interests of the U.S. rare disease pharmaceutical sector through policy advocacy activities including education, lobbying, advertising and public outreach, patient and industry meetings, roundtables, and briefings regarding federal legislative and regulatory matters affecting rare disease drug development, approval, and equitable access to treatment.

SEE PART III, LINE 1.

Balance Sheet Detail
LineBeginningEndChange
Assets
Accounts Receivable$0$699,750▲ $699,750
Cash and Non-Interest-Bearing Accounts$581,876$672,407▲ $90,531
Total Assets$581,876$1,372,157▲ $790,281
Liabilities
Deferred Revenue$0$1,076,750▲ $1,076,750
Accounts Payable and Accrued Expenses$0$72,024▲ $72,024
Total Liabilities$0$1,148,774▲ $1,148,774
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$581,876$223,383▼ $358,493
Total Net Assets Fund Balance$581,876$223,383▼ $358,493
Total Liabilities and Net Assets / Fund Balance$581,876$1,372,157▲ $790,281
Compensation and Service Providers

Board Members and Trustees

NameTitle
Curt OltmansChair
Del LebelVice-chair
Amanda MalakoffBoard Member
Ben HarshbargerBoard Member
Deirdre ParsonsBoard Member
Eric EndicottBoard Member
Francesca TedescoBoard Member
Gina CioffiBoard Member
Izzy TyszlerBoard Member
Jacqui KirbyBoard Member
Jill YersakBoard Member
Kathryn LowellBoard Member
Katie LandesBoard Member
Lauren WalrathBoard Member
Lisa KahlmanBoard Member
Sonya WeigleBoard Member
Vish SeshadriBoard Member
Davelyn HoodBoard Member - Until 09/2024
Meg AlexanderBoard Member - Until 09/2024
Max Bronstein Member Pre-Commercial At-large - Until 06/2024
Susanna Hastings Board MemberFrom 07/2024 to 12/2024
Peter Norman Board MemberFrom 09/2024 to 12/2024
Raquel Cabo Board MemberFrom 09/2024 to 12/2024
Susan Stewart Board MemberFrom 09/2024 to 12/2024
Cyndi Goss Board MemberFrom 11/2024 to 12/2024
Diane BerryMember, Commercial At-large
Matthew WintonMember, Pre-commercial At-large
Kathy PerezSecretary
Chris PorterTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
Kpm Group DcGovernment Affairs And Coalition Mgmt1455 PENNSYLVANIA AVENUE NW STE 11, Washington, DC 20004$587,744
Revenue and Support

Revenue Composition

Contributions and Grants
$0
Program Service Revenue
$595,000
Investment Income
$0
Other Revenue
$425
Change in Net Assets
$-358,493
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$953,918
Grants and Similar Amounts Paid$0
Professional Fundraising Fees$0
Salaries, Compensation, and Employee Benefits$0
Total Fundraising Expense$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Fees for Services Management---$364,658
Fees for Services Other---$252,496
Fees for Services Lobbying---$196,354
Fees for Services Accounting---$24,632
Conferences and Meetings---$20,328
Office Expenses---$1,645
Other Expenses---$1,185
Occupancy---$588
Fees for Services Legal---$100
Total Functional Expenses$0$0$0$953,918
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
In-house lobbying only
No
Subject to proxy tax
Yes

Reported Spending and Taxes

Line ItemAmount
Current Year Nondeductible Lobbying and Political Cost$196,354
Total Nondeductible Lobbying and Political Cost$100,879
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Backup withholding compliance
Yes
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
Yes
Management duties delegated
Yes

Governance Explanations

Form 990, Part VI, Section A, Line 3

Kpm group dc is contracted to manage the organization but does so under the supervision of the organization's board of directors.

Form 990, Part VI, Section A, Line 6

Member companies must have a strategic focus on developing and marketing pharmaceutical treatments for rare diseases and have paid applicable annual dues as established from time to time by the board. The coalition has two classes of members: preclinical/clinical member companies with no drugs/indications on market and commercial member companies with one or more drugs/indications on market.

Form 990, Part VI, Section A, Line 7A

Each member company designates one representative to the board of directors. The board elects 6 officers to serve annual terms in the executive committee. The executive committee is responsible for oversight of the day-to-day operations of the coalition.

Form 990, Part VI, Section A, Line 7B

The following are subject to approval by the board: annual budget, annual strategic plan, dues structure, and overall operation of the organization.

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

The form 990 is prepared by the outside accounting firm. The chairman and treasurer review the form 990 before filing.

Form 990, Part VI, Section C, Line 19

The organization's governing documents and financial statements are available to the public upon request.

Filing and Contact Details

Filer

Filer Name
Rare Disease Company Coalition Inc
EIN
86-2999172
Phone
2028097357
Address
200 MASSACHUSETTS AVENUE NW, WASHINGTON, DC 20001

Signing Officer

Name
Chris Porter
Title
Treasurer
Phone
2028097357
Signed
2025-07-29
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Curt Oltmans
Formed
2021
Legal Domicile
Dc
Voting Board Members
26
Independent Board Members
26
Employees
0
Volunteers
26

Preparer

Firm
Gelman Rosenberg & Freedman
Address
4550 MONTGOMERY AVE SUITE 800N, BETHESDA, MD 20814-2930
Preparer
Elizabeth W Heller
Phone
3019519090
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

Communications strategy 229,497. Organizational consultant 20,000. Policy/regulatory consultant 2,999.

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IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt190
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt200
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt210
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt220
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt230
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt240
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt250
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt260
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt270
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt280
IRS990/Form990PartVIISectionAGrp/TitleTxt0CHAIR
IRS990/Form990PartVIISectionAGrp/TitleTxt1VICE-CHAIR
IRS990/Form990PartVIISectionAGrp/TitleTxt2TREASURER
IRS990/Form990PartVIISectionAGrp/TitleTxt3SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt4MEMBER, COMMERCIAL AT-LARGE
IRS990/Form990PartVIISectionAGrp/TitleTxt5COMMERCIAL AT-LARGE - UNTIL 06/2024
IRS990/Form990PartVIISectionAGrp/TitleTxt6MEMBER, PRE-COMMERCIAL AT-LARGE
IRS990/Form990PartVIISectionAGrp/TitleTxt7BOARD MEMBER - UNTIL 09/2024
IRS990/Form990PartVIISectionAGrp/TitleTxt8FROM 09/2024 TO 12/2024
IRS990/Form990PartVIISectionAGrp/TitleTxt9BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt10BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt11FROM 11/2024 TO 12/2024
IRS990/Form990PartVIISectionAGrp/TitleTxt12BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt13FROM 07/2024 TO 12/2024
IRS990/Form990PartVIISectionAGrp/TitleTxt14BOARD MEMBER - UNTIL 09/2024
IRS990/Form990PartVIISectionAGrp/TitleTxt15BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt16BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt17BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt18BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt19BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt20FROM 09/2024 TO 12/2024
IRS990/Form990PartVIISectionAGrp/TitleTxt21BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt22BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt23FROM 09/2024 TO 12/2024
IRS990/Form990PartVIISectionAGrp/TitleTxt24BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt25BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt26BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt27BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt28BOARD MEMBER
IRS990/Form990ProvidedToGvrnBodyInd00
IRS990/FormationYr02021
IRS990/FormerOfcrEmployeesListedInd00
IRS990/FSAuditedInd00
IRS990/FundraisingActivitiesInd00
IRS990/GamingActivitiesInd00
IRS990/GoverningBodyVotingMembersCnt026
IRS990/GrantsToIndividualsInd00
IRS990/GrantsToOrganizationsInd00
IRS990/GrantToRelatedPersonInd00
IRS990/GrossReceiptsAmt0595425
IRS990/GroupReturnForAffiliatesInd00
IRS990/IncludeFIN48FootnoteInd00
IRS990/IndependentAuditFinclStmtInd00
IRS990/IndependentVotingMemberCnt026
IRS990/IndivRcvdGreaterThan100KCnt00
IRS990/IndoorTanningServicesInd00
IRS990/InfoInScheduleOPartIXInd0X
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InvestmentInJointVentureInd00
IRS990/IRPDocumentCnt02
IRS990/IRPDocumentW2GCnt00
IRS990/LegalDomicileStateCd0DC
IRS990/LoanOutstandingInd00
IRS990/LocalChaptersInd00
IRS990/MaterialDiversionOrMisuseInd00
IRS990/MembersOrStockholdersInd01
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd01
IRS990/MinutesOfGoverningBodyInd01
IRS990/MissionDesc0THE MISSION OF THE RARE DISEASE COMPANY COALITION IS TO STIMULATE DEVELOPMENT OF AND ACCESS TO RARE DISEASE TREATMENTS.
IRS990/MoreThan5000KToIndividualsInd00
IRS990/MoreThan5000KToOrgInd00
IRS990/NetAssetsOrFundBalancesBOYAmt0581876
IRS990/NetAssetsOrFundBalancesEOYAmt0223383
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt0581876
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt0223383
IRS990/NoListedPersonsCompensatedInd0X
IRS990/NondeductibleContributionsInd01
IRS990/NondeductibleContriDisclInd01
IRS990/OccupancyGrp/TotalAmt0588
IRS990/OfficeExpensesGrp/TotalAmt01645
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501cInd0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherExpensesGrp/Desc0WHITE PAPER CREATION
IRS990/OtherExpensesGrp/Desc1MEMBERSHIP
IRS990/OtherExpensesGrp/Desc2DUES AND SUBSCRIPTIONS
IRS990/OtherExpensesGrp/Desc3DISCRETIONARY
IRS990/OtherExpensesGrp/TotalAmt080000
IRS990/OtherExpensesGrp/TotalAmt110000
IRS990/OtherExpensesGrp/TotalAmt21932
IRS990/OtherExpensesGrp/TotalAmt31185
IRS990/OtherRevenueMiscGrp/BusinessCd0900099
IRS990/OtherRevenueMiscGrp/Desc0MISCELLANEOUS
IRS990/OtherRevenueMiscGrp/ExclusionAmt0425
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt0425
IRS990/OtherRevenueTotalAmt0425
IRS990/PartialLiquidationInd00
IRS990/PoliticalCampaignActyInd00
IRS990/PrincipalOfficerNm0CURT OLTMANS
IRS990/ProfessionalFundraisingInd00
IRS990/ProgramServiceRevenueGrp/BusinessCd0900099
IRS990/ProgramServiceRevenueGrp/Desc0MEMBERSHIP DUES
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt0595000
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt0595000
IRS990/ProhibitedTaxShelterTransInd00
IRS990/PYBenefitsPaidToMembersAmt00
IRS990/PYContributionsGrantsAmt00
IRS990/PYGrantsAndSimilarPaidAmt00
IRS990/PYInvestmentIncomeAmt00
IRS990/PYOtherExpensesAmt0853798
IRS990/PYOtherRevenueAmt00
IRS990/PYProgramServiceRevenueAmt0958500
IRS990/PYRevenuesLessExpensesAmt0104702
IRS990/PYSalariesCompEmpBnftPaidAmt00
IRS990/PYTotalExpensesAmt0853798
IRS990/PYTotalProfFndrsngExpnsAmt00
IRS990/PYTotalRevenueAmt0958500
IRS990/ReconcilationRevenueExpnssAmt0-358493
IRS990/RelatedEntityInd00
IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd00
IRS990/ReportOtherAssetsInd00
IRS990/ReportOtherLiabilitiesInd00
IRS990/ReportProgramRelatedInvstInd00
IRS990/ScheduleBRequiredInd00
IRS990ScheduleC/AggregateReportedDuesNtcAmt0208250
IRS990ScheduleC/AgreeCarryoverPriorYearInd01
IRS990ScheduleC/CarriedOverAmt0-107371
IRS990ScheduleC/DuesAssessmentsAmt0595000
IRS990ScheduleC/NonDedLbbyngPltclCyovAmt0-95475
IRS990ScheduleC/NonDeductibleLbbyngPltclCYAmt0196354
IRS990ScheduleC/NonDeductibleLbbyngPltclTotAmt0100879
IRS990ScheduleC/OnlyInHouseLobbyingInd00
IRS990ScheduleC/SubstantiallyAllDuesNondedInd00
IRS990/ScheduleJRequiredInd00
IRS990/ScheduleORequiredInd01
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0KPM GROUP DC IS CONTRACTED TO MANAGE THE ORGANIZATION BUT DOES SO UNDER THE SUPERVISION OF THE ORGANIZATION'S BOARD OF DIRECTORS.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1MEMBER COMPANIES MUST HAVE A STRATEGIC FOCUS ON DEVELOPING AND MARKETING PHARMACEUTICAL TREATMENTS FOR RARE DISEASES AND HAVE PAID APPLICABLE ANNUAL DUES AS ESTABLISHED FROM TIME TO TIME BY THE BOARD. THE COALITION HAS TWO CLASSES OF MEMBERS: PRECLINICAL/CLINICAL MEMBER COMPANIES WITH NO DRUGS/INDICATIONS ON MARKET AND COMMERCIAL MEMBER COMPANIES WITH ONE OR MORE DRUGS/INDICATIONS ON MARKET.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2EACH MEMBER COMPANY DESIGNATES ONE REPRESENTATIVE TO THE BOARD OF DIRECTORS. THE BOARD ELECTS 6 OFFICERS TO SERVE ANNUAL TERMS IN THE EXECUTIVE COMMITTEE. THE EXECUTIVE COMMITTEE IS RESPONSIBLE FOR OVERSIGHT OF THE DAY-TO-DAY OPERATIONS OF THE COALITION.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3THE FOLLOWING ARE SUBJECT TO APPROVAL BY THE BOARD: ANNUAL BUDGET, ANNUAL STRATEGIC PLAN, DUES STRUCTURE, AND OVERALL OPERATION OF THE ORGANIZATION.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4THE FORM 990 IS PREPARED BY THE OUTSIDE ACCOUNTING FIRM. THE CHAIRMAN AND TREASURER REVIEW THE FORM 990 BEFORE FILING.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt5THE ORGANIZATION'S GOVERNING DOCUMENTS AND FINANCIAL STATEMENTS ARE AVAILABLE TO THE PUBLIC UPON REQUEST.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt6COMMUNICATIONS STRATEGY 229,497. ORGANIZATIONAL CONSULTANT 20,000. POLICY/REGULATORY CONSULTANT 2,999.
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0FORM 990, PART VI, SECTION A, LINE 3
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1FORM 990, PART VI, SECTION A, LINE 6
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2FORM 990, PART VI, SECTION A, LINE 7A
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3FORM 990, PART VI, SECTION A, LINE 7B
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc4FORM 990, PART VI, SECTION B, LINE 11B
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc5FORM 990, PART VI, SECTION C, LINE 19
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc6FORM 990, PART IX, LINE 11G

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