Liabilities / Assets
95th percentile
Higher debt load relative to assets than 95% of similar nonprofits.
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.
Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.
Liabilities / Assets
95th percentile
Higher debt load relative to assets than 95% of similar nonprofits.
Liabilities / Revenue
98th percentile
Higher debt load relative to revenue than 98% of similar nonprofits.
Net Margin
2nd percentile
Higher net margin than 2% of similar nonprofits.
Top Officer Pay
30th percentile
Higher top officer pay than 30% of similar nonprofits.
Top officer pay equals 0.0% of source-year revenue.
Asset Growth
98th percentile
Faster asset growth than 98% of similar nonprofits.
Revenue Growth
3rd percentile
Faster revenue growth than 3% of similar nonprofits.
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
Most recent year
2024 • Form 990Facts available. Structured filing facts are available, but richer extracted sections are limited.
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.
| Line | Beginning | End | Change |
|---|---|---|---|
| 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 |
| Name | Title |
|---|---|
| Curt Oltmans | Chair |
| Del Lebel | Vice-chair |
| Amanda Malakoff | Board Member |
| Ben Harshbarger | Board Member |
| Deirdre Parsons | Board Member |
| Eric Endicott | Board Member |
| Francesca Tedesco | Board Member |
| Gina Cioffi | Board Member |
| Izzy Tyszler | Board Member |
| Jacqui Kirby | Board Member |
| Jill Yersak | Board Member |
| Kathryn Lowell | Board Member |
| Katie Landes | Board Member |
| Lauren Walrath | Board Member |
| Lisa Kahlman | Board Member |
| Sonya Weigle | Board Member |
| Vish Seshadri | Board Member |
| Davelyn Hood | Board Member - Until 09/2024 |
| Meg Alexander | Board Member - Until 09/2024 |
| Max Bronstein Member Pre- | Commercial At-large - Until 06/2024 |
| Susanna Hastings Board Member | From 07/2024 to 12/2024 |
| Peter Norman Board Member | From 09/2024 to 12/2024 |
| Raquel Cabo Board Member | From 09/2024 to 12/2024 |
| Susan Stewart Board Member | From 09/2024 to 12/2024 |
| Cyndi Goss Board Member | From 11/2024 to 12/2024 |
| Diane Berry | Member, Commercial At-large |
| Matthew Winton | Member, Pre-commercial At-large |
| Kathy Perez | Secretary |
| Chris Porter | Treasurer |
| Contractor | Services | Location | Compensation |
|---|---|---|---|
| Kpm Group Dc | Government Affairs And Coalition Mgmt | 1455 PENNSYLVANIA AVENUE NW STE 11, Washington, DC 20004 | $587,744 |
| Line Item | Amount |
|---|---|
| Other Expenses | $953,918 |
| Grants and Similar Amounts Paid | $0 |
| Professional Fundraising Fees | $0 |
| Salaries, Compensation, and Employee Benefits | $0 |
| Total Fundraising Expense | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| 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 |
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
| Line Item | Amount |
|---|---|
| Current Year Nondeductible Lobbying and Political Cost | $196,354 |
| Total Nondeductible Lobbying and Political Cost | $100,879 |
“Kpm group dc is contracted to manage the organization but does so under the supervision of the organization's board of directors.”
“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.”
“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.”
“The following are subject to approval by the board: annual budget, annual strategic plan, dues structure, and overall operation of the organization.”
“The form 990 is prepared by the outside accounting firm. The chairman and treasurer review the form 990 before filing.”
“The organization's governing documents and financial statements are available to the public upon request.”
“Communications strategy 229,497. Organizational consultant 20,000. Policy/regulatory consultant 2,999.”
This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.
| Path | # | Value |
|---|---|---|
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| IRS990/AccountsPayableAccrExpnssGrp/BOYAmt | 0 | 0 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 72024 |
| IRS990/AccountsReceivableGrp/BOYAmt | 0 | 0 |
| IRS990/AccountsReceivableGrp/EOYAmt | 0 | 699750 |
| IRS990/ActivitiesConductedPrtshpInd | 0 | 0 |
| IRS990/ActivityOrMissionDesc | 0 | SEE PART III, LINE 1. |
| IRS990/BackupWthldComplianceInd | 0 | 1 |
| IRS990/BooksInCareOfDetail/BusinessName/BusinessNameLine1Txt | 0 | JOHN PACE |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 3019519090 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 4550 MONTGOMERY AVE 800N |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | BETHESDA |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | MD |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 20814 |
| IRS990/BusinessRlnWith35CtrlEntInd | 0 | 0 |
| IRS990/BusinessRlnWithFamMemInd | 0 | 0 |
| IRS990/BusinessRlnWithOrgMemInd | 0 | 0 |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 581876 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 672407 |
| IRS990/ChangeToOrgDocumentsInd | 0 | 0 |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 1 |
| IRS990/CollectionsOfArtInd | 0 | 0 |
| IRS990/CompensationFromOtherSrcsInd | 0 | 0 |
| IRS990/CompensationProcessCEOInd | 0 | 0 |
| IRS990/CompensationProcessOtherInd | 0 | 0 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 20328 |
| IRS990/ConflictOfInterestPolicyInd | 0 | 0 |
| IRS990/ConservationEasementsInd | 0 | 0 |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | 0 |
| IRS990/ContractorCompensationGrp/CompensationAmt | 0 | 587744 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt | 0 | 1455 PENNSYLVANIA AVENUE NW STE 11 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/CityNm | 0 | WASHINGTON |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/StateAbbreviationCd | 0 | DC |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/ZIPCd | 0 | 20004 |
| IRS990/ContractorCompensationGrp/ContractorName/BusinessName/BusinessNameLine1Txt | 0 | KPM GROUP DC |
| IRS990/ContractorCompensationGrp/ServicesDesc | 0 | GOVERNMENT AFFAIRS AND COALITION MGMT |
| IRS990/CreditCounselingInd | 0 | 0 |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 0 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 0 |
| IRS990/CYInvestmentIncomeAmt | 0 | 0 |
| IRS990/CYOtherExpensesAmt | 0 | 953918 |
| IRS990/CYOtherRevenueAmt | 0 | 425 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 595000 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | -358493 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 0 |
| IRS990/CYTotalExpensesAmt | 0 | 953918 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 0 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 595425 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | 1 |
| IRS990/DeductibleArtContributionInd | 0 | 0 |
| IRS990/DeductibleNonCashContriInd | 0 | 0 |
| IRS990/DeferredRevenueGrp/BOYAmt | 0 | 0 |
| IRS990/DeferredRevenueGrp/EOYAmt | 0 | 1076750 |
| IRS990/DelegationOfMgmtDutiesInd | 0 | 1 |
| IRS990/Desc | 0 | PROVIDE POLICY ADVOCACY SERVICES FOR RARE DISEASE COMPANIES AT THE FEDERAL LEVEL. |
| IRS990/DescribedInSection501c3Ind | 0 | 0 |
| IRS990/DisregardedEntityInd | 0 | 0 |
| IRS990/DocumentRetentionPolicyInd | 0 | 0 |
| IRS990/DonorAdvisedFundInd | 0 | 0 |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | 0 |
| IRS990/ElectionOfBoardMembersInd | 0 | 1 |
| IRS990/EmployeeCnt | 0 | 0 |
| IRS990/FamilyOrBusinessRlnInd | 0 | 0 |
| IRS990/FederalGrantAuditRequiredInd | 0 | 0 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 24632 |
| IRS990/FeesForServicesLegalGrp/TotalAmt | 0 | 100 |
| IRS990/FeesForServicesLobbyingGrp/TotalAmt | 0 | 196354 |
| IRS990/FeesForServicesManagementGrp/TotalAmt | 0 | 364658 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 252496 |
| IRS990/ForeignActivitiesInd | 0 | 0 |
| IRS990/ForeignFinancialAccountInd | 0 | 0 |
| IRS990/ForeignOfficeInd | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 7 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 8 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 9 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 10 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 11 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 12 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 13 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 14 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 15 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 16 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 17 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 18 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 19 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 20 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 21 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 22 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 23 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 24 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 25 | 0.50 |
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| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 24 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 25 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 26 | X |
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| IRS990/Form990PartVIISectionAGrp/OfficerInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 4 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 5 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 6 | X |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 0 | 0 |
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| IRS990/Form990PartVIISectionAGrp/PersonNm | 0 | CURT OLTMANS |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | DEL LEBEL |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | CHRIS PORTER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | KATHY PEREZ |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | DIANE BERRY |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | MAX BRONSTEIN MEMBER PRE- |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | MATTHEW WINTON |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | MEG ALEXANDER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | RAQUEL CABO BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | GINA CIOFFI |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 10 | ERIC ENDICOTT |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 11 | CYNDI GOSS BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 12 | BEN HARSHBARGER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 13 | SUSANNA HASTINGS BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 14 | DAVELYN HOOD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 15 | LISA KAHLMAN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 16 | JACQUI KIRBY |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 17 | KATIE LANDES |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 18 | KATHRYN LOWELL |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 19 | AMANDA MALAKOFF |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 20 | PETER NORMAN BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 21 | DEIRDRE PARSONS |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 22 | VISH SESHADRI |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 23 | SUSAN STEWART BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 24 | FRANCESCA TEDESCO |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 25 | IZZY TYSZLER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 26 | LAUREN WALRATH |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 27 | SONYA WEIGLE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 28 | JILL YERSAK |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 0 |
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| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 9 | 0 |
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| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 20 | 0 |
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| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 25 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 26 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 27 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 28 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 0 | 0 |
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| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 5 | 0 |
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| 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/ReportableCompFromRltdOrgAmt | 16 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 17 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 18 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 19 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 20 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 21 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 22 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 23 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 24 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 25 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 26 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 27 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 28 | 0 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 0 | CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | VICE-CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | TREASURER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | SECRETARY |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | MEMBER, COMMERCIAL AT-LARGE |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | COMMERCIAL AT-LARGE - UNTIL 06/2024 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | MEMBER, PRE-COMMERCIAL AT-LARGE |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | BOARD MEMBER - UNTIL 09/2024 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 8 | FROM 09/2024 TO 12/2024 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 9 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 10 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 11 | FROM 11/2024 TO 12/2024 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 12 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 13 | FROM 07/2024 TO 12/2024 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 14 | BOARD MEMBER - UNTIL 09/2024 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 15 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 16 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 17 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 18 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 19 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 20 | FROM 09/2024 TO 12/2024 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 21 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 22 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 23 | FROM 09/2024 TO 12/2024 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 24 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 25 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 26 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 27 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 28 | BOARD MEMBER |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | 0 |
| IRS990/FormationYr | 0 | 2021 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | 0 |
| IRS990/FSAuditedInd | 0 | 0 |
| IRS990/FundraisingActivitiesInd | 0 | 0 |
| IRS990/GamingActivitiesInd | 0 | 0 |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 26 |
| IRS990/GrantsToIndividualsInd | 0 | 0 |
| IRS990/GrantsToOrganizationsInd | 0 | 0 |
| IRS990/GrantToRelatedPersonInd | 0 | 0 |
| IRS990/GrossReceiptsAmt | 0 | 595425 |
| IRS990/GroupReturnForAffiliatesInd | 0 | 0 |
| IRS990/IncludeFIN48FootnoteInd | 0 | 0 |
| IRS990/IndependentAuditFinclStmtInd | 0 | 0 |
| IRS990/IndependentVotingMemberCnt | 0 | 26 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/IndoorTanningServicesInd | 0 | 0 |
| IRS990/InfoInScheduleOPartIXInd | 0 | X |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InvestmentInJointVentureInd | 0 | 0 |
| IRS990/IRPDocumentCnt | 0 | 2 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LegalDomicileStateCd | 0 | DC |
| IRS990/LoanOutstandingInd | 0 | 0 |
| IRS990/LocalChaptersInd | 0 | 0 |
| IRS990/MaterialDiversionOrMisuseInd | 0 | 0 |
| IRS990/MembersOrStockholdersInd | 0 | 1 |
| IRS990/MethodOfAccountingAccrualInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | 1 |
| IRS990/MinutesOfGoverningBodyInd | 0 | 1 |
| IRS990/MissionDesc | 0 | THE MISSION OF THE RARE DISEASE COMPANY COALITION IS TO STIMULATE DEVELOPMENT OF AND ACCESS TO RARE DISEASE TREATMENTS. |
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| IRS990/MoreThan5000KToOrgInd | 0 | 0 |
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| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 223383 |
| IRS990/NetUnrelatedBusTxblIncmAmt | 0 | 0 |
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| IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt | 0 | 223383 |
| IRS990/NoListedPersonsCompensatedInd | 0 | X |
| IRS990/NondeductibleContributionsInd | 0 | 1 |
| IRS990/NondeductibleContriDisclInd | 0 | 1 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 588 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 1645 |
| IRS990/OfficerMailingAddressInd | 0 | 0 |
| IRS990/OperateHospitalInd | 0 | 0 |
| IRS990/Organization501cInd | 0 | X |
| IRS990/OrganizationFollowsFASB117Ind | 0 | X |
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| IRS990/OtherExpensesGrp/Desc | 0 | WHITE PAPER CREATION |
| IRS990/OtherExpensesGrp/Desc | 1 | MEMBERSHIP |
| IRS990/OtherExpensesGrp/Desc | 2 | DUES AND SUBSCRIPTIONS |
| IRS990/OtherExpensesGrp/Desc | 3 | DISCRETIONARY |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 80000 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 10000 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 1932 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 1185 |
| IRS990/OtherRevenueMiscGrp/BusinessCd | 0 | 900099 |
| IRS990/OtherRevenueMiscGrp/Desc | 0 | MISCELLANEOUS |
| IRS990/OtherRevenueMiscGrp/ExclusionAmt | 0 | 425 |
| IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt | 0 | 425 |
| IRS990/OtherRevenueTotalAmt | 0 | 425 |
| IRS990/PartialLiquidationInd | 0 | 0 |
| IRS990/PoliticalCampaignActyInd | 0 | 0 |
| IRS990/PrincipalOfficerNm | 0 | CURT OLTMANS |
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| IRS990/ProgramServiceRevenueGrp/BusinessCd | 0 | 900099 |
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| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 0 | 595000 |
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| IRS990/PYOtherExpensesAmt | 0 | 853798 |
| IRS990/PYOtherRevenueAmt | 0 | 0 |
| IRS990/PYProgramServiceRevenueAmt | 0 | 958500 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 104702 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 0 |
| IRS990/PYTotalExpensesAmt | 0 | 853798 |
| IRS990/PYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/PYTotalRevenueAmt | 0 | 958500 |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | -358493 |
| IRS990/RelatedEntityInd | 0 | 0 |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | 0 |
| IRS990/ReportInvestmentsOtherSecInd | 0 | 0 |
| IRS990/ReportLandBuildingEquipmentInd | 0 | 0 |
| IRS990/ReportOtherAssetsInd | 0 | 0 |
| IRS990/ReportOtherLiabilitiesInd | 0 | 0 |
| IRS990/ReportProgramRelatedInvstInd | 0 | 0 |
| IRS990/ScheduleBRequiredInd | 0 | 0 |
| IRS990ScheduleC/AggregateReportedDuesNtcAmt | 0 | 208250 |
| IRS990ScheduleC/AgreeCarryoverPriorYearInd | 0 | 1 |
| IRS990ScheduleC/CarriedOverAmt | 0 | -107371 |
| IRS990ScheduleC/DuesAssessmentsAmt | 0 | 595000 |
| IRS990ScheduleC/NonDedLbbyngPltclCyovAmt | 0 | -95475 |
| IRS990ScheduleC/NonDeductibleLbbyngPltclCYAmt | 0 | 196354 |
| IRS990ScheduleC/NonDeductibleLbbyngPltclTotAmt | 0 | 100879 |
| IRS990ScheduleC/OnlyInHouseLobbyingInd | 0 | 0 |
| IRS990ScheduleC/SubstantiallyAllDuesNondedInd | 0 | 0 |
| IRS990/ScheduleJRequiredInd | 0 | 0 |
| IRS990/ScheduleORequiredInd | 0 | 1 |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | KPM GROUP DC IS CONTRACTED TO MANAGE THE ORGANIZATION BUT DOES SO UNDER THE SUPERVISION OF THE ORGANIZATION'S BOARD OF DIRECTORS. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | 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. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | 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. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | THE FOLLOWING ARE SUBJECT TO APPROVAL BY THE BOARD: ANNUAL BUDGET, ANNUAL STRATEGIC PLAN, DUES STRUCTURE, AND OVERALL OPERATION OF THE ORGANIZATION. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 4 | THE FORM 990 IS PREPARED BY THE OUTSIDE ACCOUNTING FIRM. THE CHAIRMAN AND TREASURER REVIEW THE FORM 990 BEFORE FILING. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 5 | THE ORGANIZATION'S GOVERNING DOCUMENTS AND FINANCIAL STATEMENTS ARE AVAILABLE TO THE PUBLIC UPON REQUEST. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 6 | COMMUNICATIONS STRATEGY 229,497. ORGANIZATIONAL CONSULTANT 20,000. POLICY/REGULATORY CONSULTANT 2,999. |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | FORM 990, PART VI, SECTION A, LINE 3 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | FORM 990, PART VI, SECTION A, LINE 6 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | FORM 990, PART VI, SECTION A, LINE 7A |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | FORM 990, PART VI, SECTION A, LINE 7B |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 4 | FORM 990, PART VI, SECTION B, LINE 11B |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 5 | FORM 990, PART VI, SECTION C, LINE 19 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 6 | FORM 990, PART IX, LINE 11G |
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