Everylife Foundation for Rare Diseases
Nonprofit profile at a glance
- EIN
- 264614274
- IRS 990 coverage
- 2010–2025
- Forms available
- Form 990 2025
- Location
- Washington, DC, USA
- Phone
- 2026977273
- Rating
- 77
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Alliance/Advocacy Organizations
Reported finances
- Revenue
- $7,526,366
- Expenses
- $7,283,962
- Assets
- $6,222,428
- Liabilities
- $1,692,796
Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.
Leadership & pay
16 people listed
Executive titles in this filing
- Michael Pearlmutter (CEO)
Highest reported compensation
- Michael Pearlmutter (CEO): $318,360 total reported compensation
- Anne Kennedy (Policy & Advocacy): $300,875 total reported compensation
- William Nolan (Chief Marketing): $225,750 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
Information regarding the foundation's programs can be obtained at www.everylifefoundation.org.
What it reported doing in 2025
Rare disease legislative advocates - rare disease legislative advocates rdla is a collaborative program designed to support the advocacy of all rare disease groups. Rdla works to empower the individual to become an advocate by providing informational meetings, legislative resources, advocacy tools, and special events that support organizations and advocates working to promote rare disease legislation. Rdla's goal is to bring the rare disease community together, grow the patient advocacy community and work collectively to ensure that the many voices of patients with rare diseases have an opportunity to be heard in state government and on capitol hill.
Operating model
- Revenue model
- Donor-supported. 66% of the money available for current operations came from contributions and gifts.
- Distribution model
- Direct operator. The filing allocates 89% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
The verdict
SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Fundraising costs are high for each dollar raised and expenses are high relative to revenue.
Rating breakdown
- Financial Efficiency: 64
- Transparency & Controls: 84
- Accountability: 100
- Sustainability: 31
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 68.6%; rating input score 69
- Program expense ratio: 70%; rating input score 70
- Fundraising efficiency: $7.23 raised per $1 spent on fundraising; rating input score 25; 25th percentile among comparable filings
Transparency & Controls
- Consistency checks: 93.3%; rating input score 93; 18th percentile among comparable filings
- Pay-setting controls: 4 of 6 controls in place; rating input score 67
- Compensation committee: Missing
- Independent consultant: Pass
- Other Form 990s reviewed: Pass
- Written employment contract: Missing
- Compensation survey or study: Pass
- Board or committee approval: Pass
- Foreign activity oversight: Limited
- Grant itemization coverage: 97.6%; rating input score 98; 39th percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
- Related-party transparency: Limited
Accountability
- Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
- Governance controls: 9 of 9 controls in place; rating input score 100
- Conflict-of-interest policy: Pass
- Whistleblower policy: Pass
- Document-retention policy: Pass
- CEO compensation review process: Pass
- Other executive compensation review process: Pass
- Form 990 shared with the board: Pass
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Pass
Sustainability
- Operating margin: 3.2%; rating input score 37; 37th percentile among comparable filings
- Total-asset coverage ratio: 0.85; rating input score 29; 29th percentile among comparable filings
- Liabilities to assets ratio: 0.27; rating input score 29; 29th percentile among comparable filings
- Officer compensation ratio: 18.4%; rating input score 17; 17th percentile among comparable filings
Growth
- Program expense growth: 11.8% per year; rating input score 100; 67th percentile among comparable filings
- Revenue growth: 12.6% per year; rating input score 100; 74th percentile among comparable filings
- Asset growth: 15.6% per year; rating input score 100; 75th percentile among comparable filings
Details
- Where the money goes: 68.6% of revenue deployed · 70% of spending went to programs
- Governance: 7 of 7 board members independent · 9 of 9 filing controls reported
- Programs: 3 filed program accomplishments · $5.1M in reported program spending
- Leadership: top reported pay $318K · 16 people listed · 4 of 6 pay-setting controls reported
- Highest-paid contractors: 2 contractors listed · $376K reported
- Consistency: 37 of 38 current checks pass · 1 finding to review
- Schedules: 7 filed schedules · includes major donors, grants, and executive pay
- Filing history: 11 filing years from 2010 to 2025
- Contacts: How to reach this organization
- Money network: 7 filed money-flow records
- Related organizations: 1 filed related-organization link
- Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
- People: Everyone the filings name, and which of them the filings identify by more than a name.
- Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- High — Financial Efficiency: Fundraising efficiency scored 25/100.
- Moderate — Sustainability: Operating margin scored 37/100.
- High — Sustainability: Total-asset coverage ratio scored 29/100.
- High — Sustainability: Officer compensation ratio scored 17/100.
- High — Sustainability: Liabilities to assets ratio scored 29/100.
- Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.