Civic Intelligence

Rare-X

990 • Fiscal year 2020 • EIN 84-2298259

Jan 01, 2020 to Dec 31, 2020 • Filed on Oct 22, 2021

Organization Profile www.rare-x.org

28 Argonaut Ste 150Aliso Viejo, CA 92656-4123

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Higher debt load relative to assets than 79% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Higher debt load relative to revenue than 73% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Higher net margin than 88% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Higher top officer pay than 54% of similar nonprofits.

Top officer pay equals 6.6% of source-year revenue.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

No value available

No earlier valid filing was available within the previous three public years.

Source year 2020

No value available

No earlier valid filing was available within the previous three public years.

Source year 2020

Balance Sheet

Liabilities / Assets79th percentile

Assets

$874,027

No earlier filing loaded for comparison.

Net Assets

$473,171

No earlier filing loaded for comparison.

Liabilities

$400,856

No earlier filing loaded for comparison.

Revenue And Expenses

Liabilities / Revenue73rd percentile Net Margin88th percentile

Revenue

$1,050,000

No earlier filing loaded for comparison.

Expenses

$576,929

No earlier filing loaded for comparison.

Net Income

$473,071

No earlier filing loaded for comparison.

Historical Trend

Balance Sheet Trend

Asset GrowthScore unavailable

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

Highlighted filing

2020

Assets$874,027

Liabilities$400,856

Net Assets$473,171

Open 2020 Filing

Operations Trend

Revenue GrowthScore unavailable

Revenue, expenses, and net income across loaded years, with this filing highlighted.

Highlighted filing

2020

Revenue$1,050,000

Expenses$576,929

Net Income$473,071

Open 2020 Filing

Jump To

Filing Snapshot

Filing Period: Jan 1, 2020 to Dec 31, 2020
Signed: Oct 22, 2021
Return Version: 2020v4.0
Gross Receipts: $1,050,000

Mission and Program Overview

Mission

RARE-X is a 501c3 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. RARE-X is adapting proven technologies and partnering with leading experts to create a federated data analysis platform specifically designed by rare community leaders and scaled to support the diverse and expanding needs of rare disease research development and care around the world and in all communities.

RARE-X believes that by enabling rare patient communities to more easily gather structure and securely share critical inclusive data through a common platform in collaboration with researchers drug developers and clinicians anywhere in the world we will accelerate diagnosis disease understanding and development of future treatments and cures across more than 9,500 rare diseases.

Balance Sheet Detail

Line	Beginning	End	Change
Assets
Cash and Non-Interest-Bearing Accounts	$100	$856,943	▲ $856,843
Land, Buildings, and Equipment, Net	$0	$15,984	▲ $15,984
Prepaid Expenses and Deferred Charges	$0	$100	▲ $100
Savings and Temporary Cash Investments	$0	$0	→ $0
Accounts Receivable	$0	$0	→ $0
Other Notes and Loans Receivable, Net	$0	$0	→ $0
Pledges and Grants Receivable	$0	$0	→ $0
Receivable From Disqualified Prsn	$0	$0	→ $0
Receivables From Officers Etc	$0	$0	→ $0
Investments Other Securities	$0	$0	→ $0
Investments Program Related	$0	$0	→ $0
Investments in Publicly Traded Securities	$0	$0	→ $0
Intangible Assets	$0	$0	→ $0
Inventories for Sale or Use	$0	$0	→ $0
Loans From Officers Directors	$0	$0	→ $0
Total Assets	$100	$874,027	▲ $873,927
Other Assets Total	$0	$1,000	▲ $1,000
Liabilities
Deferred Revenue	$0	$375,000	▲ $375,000
Accounts Payable and Accrued Expenses	$0	$25,856	▲ $25,856
Grants Payable	$0	$0	→ $0
Mortgage Notes Payable Secured by Investment Property	$0	$0	→ $0
Unsecured Notes Loans Payable	$0	$0	→ $0
Other Liabilities	$0	$0	→ $0
Escrow Account Liability	$0	$0	→ $0
Tax Exempt Bond Liabilities	$0	$0	→ $0
Total Liabilities	$0	$400,856	▲ $400,856
Net Assets / Fund Balance
Net Assets Without Donor Restrictions	$100	$473,171	▲ $473,071
Net Assets With Donor Restrictions	$0	$0	→ $0
Total Net Assets Fund Balance	$100	$473,171	▲ $473,071
Total Liabilities and Net Assets / Fund Balance	$100	$874,027	▲ $873,927

Asset Categories

Asset	Book Value	Depreciation	Basis
Buildings	$0	$0	$0
Other Land Buildings	$13,887	$1,263	$0
Land	$0	-	$0
Equipment	$2,097	$72	$0
Leasehold Improvements	$0	$0	$0

Compensation and Service Providers

Top Officer Pay54th percentile

Employees

Name	Title	Full / Part Time	Base	Total
Nicole Boice	Founder and Executive Director	FT	$69,000	$69,000

Board Members and Trustees

Name	Title
Walt Kowtoniuk	Chairperson
Alvin Shih	Board Member
Angeli Moeller	Board Member
Anthony Philippakis	Board Member
Betsey Bogard	Board Member
Craig Martin	Board Member
David Pearce	Board Member
John Reynders	Board Member
Katherine Maynard	Board Member
Morrie Ruffin	Board Member
Peter Goodhand	Board Member
Wendy Erler	Board Member

Highest Paid Contractors

Contractor	Services	Location	Compensation
None	-	-	$0

Revenue and Support

Revenue Composition

Contributions and Grants: $1,050,000
Program Service Revenue: $0
Investment Income: $0
Other Revenue: $0
All Other Contributions: $1,050,000
Change in Net Assets: $473,071

Expenses and Functional Allocation

Major Expense Lines

Line Item	Amount
Other Expenses	$507,929
Salaries, Compensation, and Employee Benefits	$69,000
Total Fundraising Expense	$47,386
Grants and Similar Amounts Paid	$0
Professional Fundraising Fees	$0

Functional Expense Allocation

Line Item	Program	Management	Fundraising	Total
Fees for Services Management	$108,803	$46,247	$17,962	$173,012
Current Officers, Directors, Trustees, and Key Employees	$29,775	$22,762	$16,463	$69,000
Information Technology	$57,910	$2,057	$3,351	$63,318
Advertising	$49,055	$9,532	$3,533	$62,120
Fees for Services Other	$37,900	$2,700	$0	$40,600
Fees for Services Accounting	$0	$20,269	$0	$20,269
Travel	$4,767	$2,383	$2,383	$9,533
Fees for Services Legal	$1,625	$3,025	$1,513	$6,163
Office Expenses	$2,286	$1,694	$1,617	$5,597
Depreciation Depletion	$0	$1,335	$0	$1,335
Occupancy	$750	$0	$0	$750
Total Functional Expenses	$404,952	$124,591	$47,386	$576,929

Fundraising, Events, and Gaming

Fundraising activities: No
Gaming activities: No
Professional fundraiser used: No

Fundraising and Gaming Totals

Line Item	Amount
Fundraising Direct Expenses	$0
Fundraising Gross Income	$0
Gaming Direct Expenses	$0
Gaming Gross Income	$0
Professional Fundraising Fees	$0

Political and Lobbying Activity

Political campaign activity: No
Lobbying activity: No
Subject to proxy tax: No

Insider Transactions and Loans

Loans and Receivables

Line Item	Beginning	End	Change
Loans from Officers, Directors, Trustees, and Key Employees	$0	$0	→ $0
Receivables from Disqualified Persons	$0	$0	→ $0
Receivables from Officers, Directors, Trustees, and Key Employees	$0	$0	→ $0

Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant: No
Annual disclosure for covered persons: Yes
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: Yes
Other officer compensation reviewed: Yes
Conflict-of-interest policy: Yes
Audited financial statements prepared: No
Key decisions subject to board approval: No
Management duties delegated: No

Governance Explanations

Part VI, Line 11A

“The Board of Directors shall receive a copy of the IRS Form 990 in advance of filing.”

Part VI, Line 12C

“RARE-X monitored conflict of interest by reminding Board members to disclose and has a COI policy for members to fill out.”

Part VI, Line 15

“The Board is responsible for establishing and maintaining a competitive compensation package for the chief executive of the organization and shall meet annually and or as often as contractually obligated to review such compensation. The Board shall review executive performance and comparable fair market value in determining compensation.”

Part VI, Line 19

“Governing documents conflict of interest policy financial statements and 990 are all available upon request.”

Filing and Contact Details

Filer

Filer Name: Rare-x
EIN: 84-2298259
In Care Of: % Nicole Boice
Phone: 9494580836
Address: 28 ARGONAUT STE 150, ALISO VIEJO, CA 92656-4123

Signing Officer

Name: Charlene Son Rigby
Title: CEO
Signed: 2021-10-22
Discuss with paid preparer: No

Organization Details

Formed: 2019
Legal Domicile: CA
Voting Board Members: 13
Independent Board Members: 12
Employees: 0
Volunteers: 0

Preparer

Firm: Fohrman & Fohrman
Address: 30071 TOMAS, STE 250, RANCHO SANTA MARGARITA, CA 92688-2186
Preparer: Rhody Downey
Phone: 9494580836

Supplemental Narrative

Additional Explanations

Part III, line 2

“-Raised Seed Funding to Launch Organization -Created Brand and Launched Website -Used Case Studies and Editorials to drive interest in RARE-X and establish credibility -Built out Strategic and Operational Plan -Built out Data Governance Strategy -Assembled Patient Engagement Team and identified first class of PAGs”

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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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IRS990/Form990PartVIISectionAGrp/TitleTxt	12	Board Member
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IRS990/MissionDesc	0	RARE-X is a 501c3 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. RARE-X is adapting proven technologies and partnering with leading experts to create a federated data analysis platform specifically designed by rare community leaders and scaled to support the diverse and expanding needs of rare disease research development and care around the world and in all communities.
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Document Assets

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Filings

Displayed year

2020 • Form 990Detailed filing. Detailed filing data is available for this year.

Assets: $874,027
Liabilities: $400,856
Net assets: $473,171
Revenue: $1,050,000
Expenses: $576,929
Net income: $473,071

	Balance Sheet			Operations
Year	Assets	Liabilities	Net Assets	Revenue	Expenses	Net Income
2021Detailed filing. Detailed filing data is available for this year.	$0.82	$0.33	$0.49	$1.70	$1.68	$0.02
2020Detailed filing. Detailed filing data is available for this year.	$0.87	$0.40	$0.47	$1.05	$0.58	$0.47