EVERYLIFE FOUNDATION FOR RARE DISEASES

EIN: 264614274 501(c)(3) Diseases & Disorders

WASHINGTON, DC

Total Revenue
$7,031,574
Total Expenses
$6,841,685
Total Assets
$6,217,588
Net Assets
$4,208,115
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
2009
Legal Domicile
MD
Principal Officer
Michael Pearlmutter
Phone
2026977273
Tax Period
2024-01-01 to 2024-12-31

EVERYLIFE FOUNDATION FOR RARE DISEASES, founded in 2009, is a community nonprofit in the Diseases & Disorders sector that reported $7.0M in total revenue in fiscal year 2024.

Mission

THE EVERYLIFE FOUNDATION FOR RARE DISEASES IS DEDICATED TO ADVANCING THE DEVELOPMENT OF TREATMENT AND DIAGNOSTIC OPPORTUNITIES FOR RARE DISEASE PATIENTS THROUGH SCIENCE-DRIVEN PUBLIC POLICY.

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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 (2024)

Revenue Breakdown

Contributions & Grants $4,869,118
Program Service Revenue $1,917,750
Investment Income $129,792
Other Revenue $114,914
TOTAL REVENUE $7,031,574

Expense Breakdown

Grants Paid $622,000
Salaries & Benefits $3,338,258
Fundraising Expenses $519,051
Program Expenses $4,819,643
Other Expenses $2,881,427
TOTAL EXPENSES $6,841,685

Year-over-Year Comparison

2024 2023 Change
Revenue $7,031,574 $6,794,644 +0.0%
Expenses $6,841,685 $6,057,115 +0.1%
Net Income $189,889 $737,529 -0.7%
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

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Liquidity & Cash Position

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Governance

Voting Members
9
Independent Members
9
Employees
31
Volunteers
15

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
5
$210,295
Total Directors
11
$0
Key Employees
0
$0
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
Anne Kennedy Policy & Advocacy 40.00
$259,793 $19,874 $279,667
Michael Pearlmutter CEO 40.00
Officer
$201,335 $8,960 $210,295
Megan Pinegar COO 40.00
$192,408 $12,475 $204,883
Jamie Sullivan Sr. Dir of Policy 40.00
$151,230 $13,160 $164,390
Edward Brasfield Sr Dir of Develop 40.00
$132,484 $9,192 $141,676
Shannon Von Felden Sr Director of Adv 40.00
$127,440 $14,160 $141,600
Vicky Seyfert-Margolis Chair 2.00
Officer Director
$0 $0 $0
Frank Sasinowski Vice Chair 2.00
Officer Director
$0 $0 $0
Stephen Groft Treasurer 2.00
Officer Director
$0 $0 $0
Jennifer Bernstein Secretary 2.00
Officer Director
$0 $0 $0
Amrit Ray - until 224 Director 2.00
Director
$0 $0 $0
Ritu Baral Director 2.00
Director
$0 $0 $0
Shandra Trantham Director 2.00
Director
$0 $0 $0
Abbey Hauser Director 2.00
Director
$0 $0 $0
Lisa Carlton Director 2.00
Director
$0 $0 $0
Cristina Casanova Might - until 122 Director 2.00
Director
$0 $0 $0
Merrill Friedman Director 2.00
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
2024 $7,031,574 $6,841,685 $6,217,588 $189,889
2023 $6,794,644 $6,057,115 $5,806,862 $737,529
2022 $5,789,261 $5,792,631 $4,495,405 $-3,370
2021 $5,479,237 $5,088,034 $4,550,600 $391,203
2020 $4,425,797 $4,005,266 $4,267,657 $420,531
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