Support Charity Navigator

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Everylife Foundation for Rare Diseases

Mission

The EveryLife Foundation for Rare Diseases is powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community.

Vision

By activating the patient advocate, we can change public policy and save lives.

Goals

1.Close the innovation gap for the 93% of rare diseases that have no FDA-approved treatment. Eliminate the diagnostic odyssey for rare disease patients.
2.Improve the regulatory process and advance regulatory science for rare disease therapies. Ensure patient access to safe and efficacious therapies and cures at the earliest moment possible
3.Empower patients to develop an impactful voice in policymaking, drug development, and regulatory decision-making.

Washington DC | EIN: 26-4614274

Profile managed by nonprofit | Is this your nonprofit?

501(c)(3) organization

1012 14th NW, Suite 500,
Washington DC 20005

https://WWW.EVERYLIFEFOUNDATION.ORG

202-697-7273

Everylife Foundation for Rare Diseases

Mission

Vision

By activating the patient advocate, we can change public policy and save lives.

Goals

1.Close the innovation gap for the 93% of rare diseases that have no FDA-approved treatment. Eliminate the diagnostic odyssey for rare disease patients.
2.Improve the regulatory process and advance regulatory science for rare disease therapies. Ensure patient access to safe and efficacious therapies and cures at the earliest moment possible
3.Empower patients to develop an impactful voice in policymaking, drug development, and regulatory decision-making.

Washington DC | EIN: 26-4614274

Profile managed by nonprofit | Is this your nonprofit?

501(c)(3) organization

1012 14th NW, Suite 500,
Washington DC 20005

https://WWW.EVERYLIFEFOUNDATION.ORG

202-697-7273

Beacon Report

Great
Good
Needs Improvement
Poor
Incomplete
Additional Information

Website Reported on Tax Form:Yes

SCORE100%

Disclosing the charity’s website promotes transparency and provides access to the public.

Source: Public data from IRS Form 990. Fiscal Year 2024.

No Material Diversion of Assets:Yes

SCORE100%

Financial Statements:Yes

SCORE100%

Audit Oversight Committee:Yes

SCORE100%

No Loans Reported To or From Officers:Yes

SCORE100%

Records Retention Policy:Yes

SCORE100%

Tax Form Disclosed on Website:No

SCORE0%

Accountability Panel
Score	Metric
100%	Website Reported on Tax Form:Yes Disclosing the charity’s website promotes transparency and provides access to the public. Source: Public data from IRS Form 990. Fiscal Year 2024.
100%	No Material Diversion of Assets:Yes
100%	Financial Statements:Yes
100%	Audit Oversight Committee:Yes
100%	No Loans Reported To or From Officers:Yes
100%	Records Retention Policy:Yes
0%	Tax Form Disclosed on Website:No

Science behind the numbers

Nonprofit Resources

Nonprofit Resources

Everylife Foundation for Rare Diseases

Mission

Vision

Goals

Everylife Foundation for Rare Diseases

Mission

Vision

Goals

Beacon Report