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Everylife Foundation for Rare Diseases

EIN 26-4614274 · Washington, DC

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthGood81 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

INFORMATION REGARDING THE FOUNDATION'S PROGRAMS CAN BE OBTAINED AT WWW.EVERYLIFEFOUNDATION.ORG.

Income
$7.5 million
Spending
$7.3 million
Spent on programs
70%
Reserves
5.5 months of spending
Largest source of income
donations and private grants, 66%
Employees
32
Volunteers
10
Highest pay
$318,360, ceo

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 81 out of 100. Higher than 49% of charities in its peer group (diseases, $1m to $10m).

  • Reserves

    20 of 35

    Spendable reserves would cover 5.5 months of spending.

  • Debt

    16 of 20

    It owes 27% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 3% of income.

  • Income trend

    15 of 15

    Income rose 7% on the year before.

  • Spending floor

    15 of 15

    70% of spending went to programs and raising each dollar of donations cost 14 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100. Higher than 61% of charities in its peer group (diseases, $1m to $10m).

  • Independent board

    25 of 25

    7 of 7 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $2.3 million spent. 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 OF THE COMMUNITY. A MEMBERSHIP-BASED PROGRAM DEDICATED TO COLLABORATIVELY BRINGING PATIENT ORGANIZATIONS, INDUSTRY LEADERS, AND OTHER RARE DISEASE STAKEHOLDERS TOGETHER, THE COMMUNITY CONGRESS ACTS AS A STRATEGIC ADVISORY COUNCIL, PROVIDING ADVICE AND INSIGHT ON URGENT POLICY ISSUES IMPACTING THE RARE DISEASE COMMUNITY.
  2. $1.8 million spent. 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.
  3. $917,976 spent. Patient programs and opportunities for patient engagement and community including an artist contest, collaborative workspace, and communications tools.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since October 2009.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.