Civic Intelligence

Rare-X

EIN 84-2298259 • 501(c)3 • Washington, DC

Profile

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.

1012 14th Street 500Washington, DC 20005

www.rare-x.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

79th percentile

0.40x

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

501(c)3 • $1M-$5M nonprofits • Source year 2021

Liabilities / Revenue

65th percentile

0.19x

Higher debt load relative to revenue than 65% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2021

Net Margin

42nd percentile

1.2%

Higher net margin than 42% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2021

Top Officer Pay

Score unavailable

No value available

No filing with officer rows is available for this organization yet.

Asset Growth

21st percentile

-5.8%

Faster asset growth than 21% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2020 to 2021

Revenue Growth

88th percentile

62%

Faster revenue growth than 88% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2020 to 2021

Balance Sheet
Liabilities / Assets79th percentile

Assets

Down

$822,952

Down $51,075 (-5.8%) from 2020

Liabilities

Down

$329,764

Down $71,092 (-18%) from 2020

Net Assets

Up

$493,188

Up $20,017 (+4.2%) from 2020

Operations
Liabilities / Revenue65th percentileNet Margin42nd percentile

Revenue

Up

$1,701,050

Up $651,050 (+62%) from 2020

Expenses

Up

$1,681,033

Up $1,104,104 (+191%) from 2020

Net Income

Down

$20,017

Down $453,054 (-96%) from 2020

Trend Graphs

Balance Sheet Trend

Asset Growth21st percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$1.0M$500K$0Assets 2020: $874,027Liabilities 2020: $400,856Net Assets 2020: $473,1712020Assets 2021: $822,952Liabilities 2021: $329,764Net Assets 2021: $493,1882021

Highlighted filing

2021

Assets$822,952
Liabilities$329,764
Net Assets$493,188
Open 2021 Filing

Operations Trend

Revenue Growth88th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$2.0M$1.5M$1.0M$500K$0Revenue 2020: $1,050,000Expenses 2020: $576,929Net Income 2020: $473,0712020Revenue 2021: $1,701,050Expenses 2021: $1,681,033Net Income 2021: $20,0172021

Highlighted filing

2021

Revenue$1,701,050
Expenses$1,681,033
Net Income$20,017
Open 2021 Filing

Filings

Most recent year

2021 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$822,952
Liabilities
$329,764
Net assets
$493,188
Revenue
$1,701,050
Expenses
$1,681,033
Net income
$20,017
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet 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
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2021 to Dec 31, 2021
Signed
Sep 29, 2022
Return Version
2021v4.0
Gross Receipts
$1,701,050
Mission and Program Overview

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.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$856,943$659,432▼ $197,511
Accounts Receivable-$150,000-
Land, Buildings, and Equipment, Net$15,984$12,520▼ $3,464
Prepaid Expenses and Deferred Charges$100$0▼ $100
Savings and Temporary Cash Investments-$0-
Other Notes and Loans Receivable, Net-$0-
Pledges and Grants Receivable-$0-
Receivable From Disqualified Prsn-$0-
Receivables From Officers Etc-$0-
Investments Other Securities-$0-
Investments Program Related-$0-
Investments in Publicly Traded Securities-$0-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Total Assets$874,027$822,952▼ $51,075
Other Assets Total$1,000$1,000→ $0
Liabilities
Deferred Revenue$375,000--
Accounts Payable and Accrued Expenses$25,856$329,764▲ $303,908
Total Liabilities$400,856$329,764▼ $71,092
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$473,171$493,188▲ $20,017
Total Net Assets Fund Balance$473,171$493,188▲ $20,017
Total Liabilities and Net Assets / Fund Balance$874,027$822,952▼ $51,075

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$10,857$4,293$15,150
Equipment$1,663$506$2,169
Compensation and Service Providers
Top Officer PayScore unavailable

Employees

NameTitleFull / Part TimeBaseTotal
Nicole BoiceExecutive DirectorFT$148,000$148,000
Charlene Son RigbyCEOFT$50,000$50,000

Board Members and Trustees

NameTitle
Alvin ShihDirector
Angeli MoellerDirector
Anthony PhilippakisDirector
Betsy BogardDirector
Craig MartinDirector
Cynthia GrossmanDirector
David PearceDirector
Jason ColquittDirector
John ReyndersDirector
Katherine MaynardDirector
Morrie RuffinDirector
Peter GoodhandDirector
Simon FrostDirector
Walt KowtoniukDirector
Wendy ErlerDirector
Revenue and Support

Revenue Composition

Contributions and Grants
$1,701,050
Program Service Revenue
$0
Investment Income
$0
Other Revenue
$0
All Other Contributions
$1,701,050
Change in Net Assets
$20,017
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$1,483,033
Salaries, Compensation, and Employee Benefits$198,000
Total Fundraising Expense$103,872
Grants and Similar Amounts Paid$0
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Information Technology$435,796$8,151$3,115$447,062
Fees for Services Management$147,067$105,876$57,057$310,000
Fees for Services Other$267,428$5,636$5,448$278,512
Current Officers, Directors, Trustees, and Key Employees$93,933$67,624$36,443$198,000
Fees for Services Legal$38,507$333-$38,840
Fees for Services Accounting-$19,059-$19,059
Advertising$7,582$5,054$657$13,293
Occupancy$7,100--$7,100
Travel$3,286$76$195$3,557
Depreciation Depletion-$3,464-$3,464
Other Expenses$2,153$92$92$2,337
All Other Expenses-$946-$946
Insurance-$647-$647
Total Functional Expenses$1,356,025$221,136$103,872$1,681,033
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
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 ItemBeginningEndChange
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$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

Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et

“Jason Colquitt is the owner/CEO of Across Healthcare and we use Across Healthcare as our technology platform vendor and also subcontract people/consultants.”

Form 990, Part VI, Line 11B: Form 990 Review Process

“The board of directors recieve a copy of the irs form 990 in advance of filing.”

Form 990, Part VI, Line 12C: Explanation of Monitoring and Enforcement of Conflicts

“Board members are required to sign a conflict of interest form annually.”

Form 990, Part VI, Line 15A: Compensation Review & Approval Process - CEO, Top Management

“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.”

Form 990, Part VI, Line 15B: Compensation Review and Approval Process for Officers and Key Employees

“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.”

Form 990, Part VI, Line 19: Other Organization Documents Publicly Available

“No documents available to the public.”

Filing and Contact Details

Filer

Filer Name
Rare-x
EIN
84-2298259
Phone
9494580836
Address
1012 14TH STREET 500, WASHINGTON, DC 20005

Signing Officer

Name
Charlene Son Rigby
Title
CEO
Signed
2022-09-29
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Charlene Son Rigby
Formed
2019
Legal Domicile
CA
Voting Board Members
15
Independent Board Members
13
Employees
0
Volunteers
65

Preparer

Firm
Guzman & Gray Certified Public Accountants
Address
4510 E Pacific Coast Highway Suite, Long Beach, CA 90804
Preparer
Patrick S Guzman CPA
Phone
5624980997
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