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Compensation 990 is an independent service that uses public IRS Form 990 filings as its source data. We clean and standardize this information, but the original filings may contain errors or omissions. Years on this site refer to the organization’s fiscal year end date on the filing.

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Organizations Rare-X

Rare-X

Fiscal year ending 2021. Filed on September 30, 2022.

1012 14th Street 500
Washington, District of Columbia 20005

Rare-X (EIN: 84-2298259) has filed an IRS Form 990 from fiscal year 2020–2021. In its fiscal year 2021 IRS Form 990 filing, Rare-X, a 501(c)(3) charitable organization, reported compensation for 2 employees. Among the employees shown here, the average compensation is $99,000. The highest compensated employee at Rare-X is Nicole Boice with fiscal year 2021 compensation of $148,000.

Revenue, expenses, and employee compensation

Revenue

$1,701,050

Expenses

$1,681,033

Employee compensation

$198,000
Revenue, expenses, and employee compensation over time

Reported Compensated Employees

Nicole Boice
Executive Director
$148,000
$148,000 No related compNo other comp
Charlene Son Rigby
Chief Executive Officer
$50,000
$50,000 No related compNo other comp

Benchmark Employee Compensation

Non-Employee Board Members

Alvin Shih
Director
Angeli Moeller
Director
Anthony Philippakis
Director
Betsy Bogard
Director
Craig Martin
Director
Cynthia Grossman
Director
David Pearce
Director
Jason Colquitt
Director
John Reynders
Director
Katherine Maynard
Director
Morrie Ruffin
Director
Peter Goodhand
Director

Mission Statement

RARE-X is a 501(c)(3) non-profit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.We are piloting a series of demonstration projects, partnering with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support the global needs of those developing treatments and caring for rare disease patients. Also, we are leveraging existing technology powered by the Broad Institute of MIT and Harvard, which will support patients (in data collection, structuring and responsible sharing), clinicians (in accelerating diagnosis and improving and tracking health outcomes), researchers and biopharma (with the data they need to identify, develop and track the impact of breakthrough treatments and cures).Additionally, we are adapting proven technologies and partnering with leading experts to create a federated data analysis platform, specifically designed by rare community leaders and

Revisions to this organization profile

September 30, 2022:
2021 Rare-X 990 filed
October 22, 2021:
2020 Rare-X 990 filed

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