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Rare Disease Company Coalition Inc

  • Washington, DC
  • Tax-exempt since March 2023
  • EIN: 86-2999172

Organization summary

Type of Nonprofit

Designated as a Business leagues, chambers of commerce, real estate boards, etc, created for the improvement of business conditions.

Category: Educational Institutions and Related Activities / Alliance/Advocacy Organizations (NTEE)

Summary charts: organization finances over time

Revenue
$959k (2023)

Expenses
$854k (2023)

Total Assets
$582k (2023)

Total Liabilities
$0 (2023)

Source: Form 990 tax filings from 2021 to 2023

Tax Filings by Year

Form 990 is an information return that most organizations claiming federal tax-exempt status must file yearly with the IRS. Nonprofit Explorer has IRS digitized Form 990 data for filings processed in 2012 and later. If this organization filed an amended return, it may not be reflected below. Duplicate download links may indicate a resubmission or amendment to this organization's original return. Form 990 data is from the IRS.

Fiscal Year Ending Dec.
2023

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$958,500
Expenses
$853,798
Net Income
$104,702
Net Assets
$581,876
Notable Sources of Revenue Percent of Total Revenue
Contributions $0
Program Services $958,500
100%
Investment Income $0
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $581,876
Total Liabilities $0
Net Assets $581,876
Compensation
Key Employees and Officers Compensation Related Other
Curt Oltmans (Chairman) $0 $0 $0
Del Lebel (Vice Chairman) $0 $0 $0
Chris Porter (Treasurer) $0 $0 $0
Kathy Perez (Secretary) $0 $0 $0
Matt Winton (Member, Pre Commercial At Large) $0 $0 $0
Diane Berry (Member, Commercial At Large) $0 $0 $0
Vishwas Seshadri (Member, Board Of Directors) $0 $0 $0
Francesca Tedesco (Member, Board Of Directors) $0 $0 $0
Pete Norman (Member, Board Of Directors) $0 $0 $0
Deirdre Parsons (Member, Board Of Directors) $0 $0 $0
Ben Harshbarger (Member, Board Of Directors) $0 $0 $0
Kathryn Lowell (Member, Board Of Directors) $0 $0 $0
Amanda Malakoff (Member, Board Of Directors) $0 $0 $0
Gina Cioffi (Member, Board Of Directors) $0 $0 $0
Jacqui Kirby (Member, Board Of Directors) $0 $0 $0
Susie Hastings (Member, Board Of Directors) $0 $0 $0
Lauren Walrath (Member, Board Of Directors) $0 $0 $0
Sonya Weigle (Member, Board Of Directors) $0 $0 $0
Meg Alexander (Member, Board Of Directors) $0 $0 $0
Eric Endicott (Member, Board Of Directors) $0 $0 $0
Sue Stewart (Member, Board Of Directors) $0 $0 $0
Jill Yersak (Member, Board Of Directors) $0 $0 $0
Katie Landes (Member, Board Of Directors) $0 $0 $0
Lisa Kahlman (Member, Board Of Directors) $0 $0 $0
Izzy Tyszler (Member, Board Of Directors) $0 $0 $0
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Document Links

990
Filed on Nov. 14, 2024

Primary tax return for a nonprofit’s activities, finances, and governance

View Filing
XML

Fiscal Year Ending Dec.
2022

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,117,083
Expenses
$731,060
Net Income
$386,023
Net Assets
$477,175
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,117,083
100%
Program Services $0
Investment Income $0
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $477,461
Total Liabilities $286
Net Assets $477,175
Compensation
Key Employees and Officers Compensation Related Other
Deirdre Parsons (President) $0 $0 $0
Michael Di Matteo (Vice President) $0 $0 $0
Betsy Ricketts (Secretary) $0 $0 $0
Del Lebel (Member) $0 $0 $0
Ben Harshbarger (Member) $0 $0 $0
Geoff Werth (Fed Policy Comm) $0 $0 $0
Lauren Walrath (Member) $0 $0 $0
Diane Berry (Member At Large) $0 $0 $0
Braden Parker (Member) $0 $0 $0
David Chapman (Communications) $0 $0 $0
Chris Porter (Treasurer) $0 $0 $0
Tricia Sterling (Member) $0 $0 $0
Sheila Frame (Member) $0 $0 $0
Graham Owens (Executive Dir.) $0 $0 $0
Kathryn Lowell (Member) $0 $0 $0
Gina Cioffi (Member) $0 $0 $0
Curt Oltmans (Member) $0 $0 $0
Brent Fisk (Member) $0 $0 $0
Sasha Damouni Ellis (Member) $0 $0 $0
Davelyn Hood (Member) $0 $0 $0
Ramon Coronado (Member) $0 $0 $0
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Document Links

990
Filed on Nov. 15, 2023

Primary tax return for a nonprofit’s activities, finances, and governance

View Filing
PDF XML

Fiscal Year Ending Dec.
2021

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$401,249
Expenses
$310,097
Net Income
$91,152
Net Assets
$91,152
Notable Sources of Revenue Percent of Total Revenue
Contributions $401,249
100%
Program Services $0
Investment Income $0
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $91,152
Total Liabilities $0
Net Assets $91,152
Other
Reported conflict of interest transactions
Compensation
Key Employees and Officers Compensation Related Other
Deirdre Parsons (President) $0 $0 $0
Michael Di Matteo (Vice President) $0 $0 $0
Betsy Ricketts (Secretary) $0 $0 $0
Amanda Malakoff (Executive Dir.) $0 $0 $0
Katie Jones (Fed Policy Comm) $0 $0 $0
Geoff Werth (Fed Policy Comm) $0 $0 $0
Christine Harrison (Member At Large) $0 $0 $0
Diane Berry (Member At Large) $0 $0 $0
Bruce Bloom (Operations Comm) $0 $0 $0
Jessi Rennekamp (Communications) $0 $0 $0
Kate Segal (State Policy Co) $0 $0 $0
Tricia Sterling (Member) $0 $0 $0
Sheila Frame (Member) $0 $0 $0
Hyonelle Youngson (Member) $0 $0 $0
Kathryn Lowell (Member) $0 $0 $0
Gina Cioffi (Member) $0 $0 $0
Curt Oltmans (Member) $0 $0 $0
Brent Fisk (Member) $0 $0 $0
Sasha Damouni Ellis (Member) $0 $0 $0
Davelyn Hood (Member) $0 $0 $0
Ramon Coronado (Member) $0 $0 $0
Emily Mc Ginnis (Member) $0 $0 $0
Andrea Wilkinson (Member) $0 $0 $0
Kerryn Lawson (Treasurer) $0 $0 $0
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Document Links

990
Filed on May 17, 2023

Primary tax return for a nonprofit’s activities, finances, and governance

View Filing
XML

About This Data

Nonprofit Explorer includes summary data for nonprofit tax returns and full Form 990 documents, in both PDF and digital formats.

The summary data contains information processed by the IRS during the 2012-2019 calendar years; this generally consists of filings for the 2011-2018 fiscal years, but may include older records. This data release includes only a subset of what can be found in the full Form 990s.

In addition to the raw summary data, we link to PDFs and digital copies of full Form 990 documents wherever possible. This consists of separate releases by the IRS of Form 990 documents processed by the agency, which we update regularly.

We also link to copies of audits nonprofit organizations that spent $750,000 or more in Federal grant money in a single fiscal year since 2016. These audits are copied from the Federal Audit Clearinghouse.

Which Organizations Are Here?

Every organization that has been recognized as tax exempt by the IRS has to file Form 990 every year, unless they make less than $200,000 in revenue and have less than $500,000 in assets, in which case they have to file form 990-EZ. Organizations making less than $50,000 don’t have to file either form but do have to let the IRS they’re still in business via a Form 990N "e-Postcard."

Nonprofit Explorer has organizations claiming tax exemption in each of the 27 subsections of the 501(c) section of the tax code, and which have filed a Form 990, Form 990EZ or Form 990PF. Taxable trusts and private foundations that are required to file a form 990PF are also included. Small organizations filing a Form 990N "e-Postcard" are not included in this data.

Types of Nonprofits

There are 27 nonprofit designations based on the numbered subsections of section 501(c) of the tax code. See the list »

Get the Data

For those interested in acquiring the original data from the source, here’s where our data comes from:

  • Raw filing data. Includes EINs and summary financials as structured data.
  • Exempt Organization profiles. Includes organization names, addresses, etc. You can merge this with the raw filing data using EIN numbers.
  • Form 990 documents. Prior to 2017, these documents were obtained and processed by Public.Resource.org and ProPublica. Bulk PDF downloads since 2017 are available from the IRS.
  • Form 990 documents as XML files. Includes complete filing data (financial details, names of officers, tax schedules, etc.) in machine-readable format. Only available for electronically filed documents. Electronic data released prior to October 2021 is also available through Amazon Web Services.
  • Audits. PDFs of single or program-specific audits for nonprofit organizations that spent $750,000 or more in Federal grant money in a single fiscal year. Available for fiscal year 2015 and later.

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Byline

By Andrea Suozzo, Alec Glassford and Ash Ngu, ProPublica, and Brandon Roberts, Special to ProPublica.
Design by Jeff Frankl. Additional development by Ken Schwencke, Mike Tigas, and Sisi Wei.

E-file viewer adapted from IRS e-File Viewer by Ben Getson. Code for scraping audit documents adapated from Govwiki.

Updated