RARE-X

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Financial Vulnerability Assessment (Tuckman-Chang)

4 risk indicators measuring financial stability and operational resilience

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Financial Trends

Organization Details

Formation Year

2019

Legal Domicile

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

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

Program Service Accomplishments

Program 1

Expenses: $1,356,025

RARE-X is:- 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.- 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).- 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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Trantor Score

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

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

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

Governance

Voting Members

Independent Members

Employees

N/A

Volunteers

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

$198,000

Total Directors

Key Employees

Highest Compensated

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