Mission
INFORMATION REGARDING THE FOUNDATION'S PROGRAMS CAN BE OBTAINED AT WWW.EVERYLIFEFOUNDATION.ORG.
Public Charity
EVERYLIFE FOUNDATION FOR RARE DISEASES
Based in WASHINGTON, DC, EVERYLIFE FOUNDATION FOR RARE DISEASES operates as a Public Charity. The organization reported $7.5M in revenue, $7.3M in expenses, $6.2M in total assets for fiscal year 2025. Imperigo tracks 53 reported grant relationships connected to this organization totaling approximately $3.7M.
EIN: 264614274
WASHINGTON, DC
Alliances & Advocacy
NTEE: G01
Latest filing: 2025
Total Revenue$7.5M
Total Expenses$7.3M
Total Assets$6.2M
Grant Records53
Funding Total$3.7M
Filing Years2021–2025
Where $100 goes at Everylife Foundation for Rare Diseases
How Everylife Foundation for Rare Diseases divides every $100 it spends, from its own Form 990 filings, averaged across 6 years.
$74
Programs
the work itself
$19
Management
running the organization
$7
Fundraising
raising the next dollar
Inside the $74 for programs
$34
The policy priorities and initiatives of the everylife foundation are identified by the everylife foundation community congress, to ensure that our policy priorities reflect the most pressing needs…
$27
Rare disease legislative advocates
$13
Patient programs and opportunities for patient engagement and community including an artist contest, collaborative workspace, and communications tools
Source: Form 990 filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.
Sample Grants Received
PROVIDE GENERAL OPERATING SUPPORT
$438,867
SCHOLARSHIPS
$210,711
GENERAL CONTRIBUTION
$20,000
GENERAL SUPPORT
$17,977
GENERAL SUPPORT
$17,977
Showing up to 5 of 53 total records — full history available with membership.
Officers & Directors
Chair
Amy Gaviglio - As Of 1225
Policy & Advocacy
Anne Kennedy
Sr Dir of Develop
Edward Brasfield
Vice Chair
Frank Sasinowski
Sr. Dir of Policy
Jamie Sullivan
Secretary
Jennifer Bernstein
Officer compensation and complete director data available with membership.
Top Grant Purposes
Financial Trends
| Year | Revenue | Expenses | Assets |
|---|---|---|---|
| 2025 | $7.5M | $7.3M | $6.2M |
| 2024 | $7.0M | $6.8M | $6.2M |
| 2023 | $6.8M | $6.1M | $5.8M |
| 2022 | $5.8M | $5.8M | $4.5M |
| 2021 | $5.5M | $5.1M | $4.6M |
Between 2021 and 2025, reported annual revenue grew from $5.5M to $7.5M (+37%), with total assets most recently reported at $6.2M.
Interactive year-over-year charts and full filing details available with membership.