RARE-X

EIN: 842298259 501(c)(3)

WASHINGTON, DC

Total Revenue
$1,701,050
Total Expenses
$1,681,033
Total Assets
$822,952
Net Assets
$493,188
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
2019
Legal Domicile
CA
Principal Officer
CHARLENE SON RIGBY
Phone
9494580836
Tax Period
2021-01-01 to 2021-12-31

RARE-X, founded in 2019, is a community nonprofit that reported $1.7M in total revenue in fiscal year 2021. Revenue surged 62% from the prior year, signaling strong growth momentum.

Mission

To accelerate diagnosis, disease understanding, and development of future treatments and cures across more than 9,500 rare diseases 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.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2021)

Revenue Breakdown

Contributions & Grants $1,701,050
Program Service Revenue $0
Investment Income $0
Other Revenue $0
TOTAL REVENUE $1,701,050

Expense Breakdown

Grants Paid $0
Salaries & Benefits $198,000
Fundraising Expenses $103,872
Program Expenses $1,356,025
Other Expenses $1,483,033
TOTAL EXPENSES $1,681,033

Year-over-Year Comparison

2021 2020 Change
Revenue $1,701,050 $1,050,000 +0.6%
Expenses $1,681,033 $576,929 +1.9%
Net Income $20,017 $473,071 -1.0%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Financial Health Indicators

Comprehensive financial analysis: Altman Z-Score, liquidity, solvency, sustainability, efficiency, and growth metrics

Financial Distress Indicator

Liquidity & Cash Position

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Altman Z-Score • Liquidity Ratios • Solvency Analysis • Growth Indicators • Efficiency Metrics

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Governance

Voting Members
15
Independent Members
13
Employees
N/A
Volunteers
65

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
2
$198,000
Total Directors
15
$0
Key Employees
0
$0
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
NICOLE BOICE Executive Dir. 47.00
Officer
$148,000 $0 $148,000
CHARLENE SON RIGBY CEO 40.00
Officer
$50,000 $0 $50,000
BETSY BOGARD Director 2.00
Director
$0 $0 $0
JASON COLQUITT Director 2.00
Director
$0 $0 $0
WENDY ERLER Director 2.00
Director
$0 $0 $0
SIMON FROST Director 3.00
Director
$0 $0 $0
PETER GOODHAND Director 1.00
Director
$0 $0 $0
CYNTHIA GROSSMAN Director 1.00
Director
$0 $0 $0
WALT KOWTONIUK Director 5.00
Director
$0 $0 $0
CRAIG MARTIN Director 3.00
Director
$0 $0 $0
KATHERINE MAYNARD Director 1.50
Director
$0 $0 $0
ANGELI MOELLER Director 2.00
Director
$0 $0 $0
DAVID PEARCE Director 1.00
Director
$0 $0 $0
ANTHONY PHILIPPAKIS Director 2.00
Director
$0 $0 $0
JOHN REYNDERS Director 3.00
Director
$0 $0 $0
MORRIE RUFFIN Director 3.00
Director
$0 $0 $0
ALVIN SHIH Director 1.50
Director
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2021 $1,701,050 $1,681,033 $822,952 $20,017
2020 $1,050,000 $576,929 $874,027 $473,071
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