EVERYLIFE FOUNDATION FOR RARE DISEASES

As filed

Subsection

03

NTEE code

G012

Classification

2100

Street

1012 14TH ST NW STE 500

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Other organizations at this address

5 other organizations in the IRS Business Master File list the same street address. matched by us

This address is a suite or unit (STE 500). Organizations that share one are often clients of the same office-services firm, accountant or registered agent rather than related to each other.

We match the street line and ZIP code as the IRS gives them, ignoring case and outer spaces and nothing else, so "AVE" and "AVENUE" count as different streets and this list can miss some. A shared address can mean related organizations or a shared office, but it can also be a registered agent, a mail drop or a service provider holding mail for unrelated clients. It is not, by itself, evidence that two organizations are connected.

• GLOBAL GENES

  EIN 26-3331487

• NATIONAL FRAGILE X FOUNDATION

  EIN 84-0960471

• RARE ACCESS PROJECT INC

  EIN 82-4444757

• THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC

  EIN 31-1405490

• UNDIAGNOSED DISEASES NETWORK FOUNDATION

  EIN 87-3474254

Mission and programs · 2025

• 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.

  Expenses $2,345,940 · Revenue $2,100,250

• 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.

  Expenses $1,835,953

• Patient programs and opportunities for patient engagement and community including an artist contest, collaborative workspace, and communications tools.

  Expenses $917,976 · Grants $550,640 · Revenue $147,428

As filed on the 2025 return.

Officers and directors · 2025

As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us. Earlier years are each on their own filing page.

Filings

• 2025

  Revenue

  $7,526,366

  Expenses

  $7,283,962

  Contributions

  $4,948,973

  Grants paid

  $550,640

• 2024

  Revenue

  $7,031,574

  Expenses

  $6,841,685

  Contributions

  $4,869,118

  Grants paid

  $622,000

• 2023

  Revenue

  $6,794,644

  Expenses

  $6,057,115

  Contributions

  $6,643,478

  Grants paid

  $446,372

• 2022

  Revenue

  $5,789,261

  Expenses

  $5,792,631

  Contributions

  $5,643,088

  Grants paid

  $421,405

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

• 2021 · 990

  Revenue

  $5,479,237

  Expenses

  $5,088,034

  Assets (EOY)

  $4,550,600

• 2020 · 990

  Revenue

  $4,425,797

  Expenses

  $4,005,266

  Assets (EOY)

  $4,267,657

• 2016 · 990

  Revenue

  $2,222,355

  Expenses

  $2,207,163

  Assets (EOY)

  $651,805

• 2015 · 990

  Revenue

  $1,787,563

  Expenses

  $1,699,639

  Assets (EOY)

  $516,371

• 2014 · 990

  Revenue

  $1,351,627

  Expenses

  $1,214,362

  Assets (EOY)

  $436,978

• 2011 · 990

  Revenue

  — not reported

  Expenses

  $711,654

  Assets (EOY)

  $213,321

• 2010 · 990

  Revenue

  — not reported

  Expenses

  $927,174

  Assets (EOY)

  $167,604

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all.

Grants made

• Scholarship America

  $615,000

  2024 · scholarships

• Scholarship America

  $537,500

  2025 · scholarships

• Scholarship America

  $433,175

  2023 · scholarships

• Scholarship America

  $405,000

  2022 · scholarships

Where these grants went next →

Grants received

• SILICON VALLEY COMMUNITY FOUNDATION

  $500,000

  2023 · Health

• MARIN COMMUNITY FOUNDATION

  $438,867

  2024 · PROVIDE GENERAL OPERATING SUPPORT

• MARIN COMMUNITY FOUNDATION

  $222,495

  2022 · GENERAL OPERATING SUPPORT

• AMYOTROPHIC LATERAL SCLEROSIS ASSN

  $210,711

  2024 · SCHOLARSHIPS

• SILICON VALLEY COMMUNITY FOUNDATION

  $200,000

  2022 · Health

• MARIN COMMUNITY FOUNDATION

  $193,912

  2023 · PROVIDE GENERAL OPERATING SUPPORT

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $50,050

  2022 · For grant recipient's exempt purposes

• VANGUARD CHARITABLE ENDOWMENT PROGRAM

  $50,000

  2023 · FOR RECIPIENT'S EXEMPT PURPOSE

• PHARMACEUTICAL RESEARCH AND MANUFACTURERS OF AMERICA

  $50,000

  2023 · General Contribution

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $31,500

  2023 · For grant recipient's exempt purposes

The 10 largest by cash amount. The API serves every itemized grant.

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