Everylife Foundation For Rare Diseases

Organization Overview

Everylife Foundation For Rare Diseases is located in Washington, DC. The organization was established in 2009. According to its NTEE Classification (G01) the organization is classified as: Alliances & Advocacy, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2021, Everylife Foundation For Rare Diseases employed 18 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Everylife Foundation For Rare Diseases is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2021, Everylife Foundation For Rare Diseases generated $5.5m in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 17.4% each year . All expenses for the organization totaled $5.1m during the year ending 12/2021. While expenses have increased by 17.0% per year over the past 7 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2021

Describe the Organization's Mission:

Part 3 - Line 1

THE EVERYLIFE FOUNDATION FOR RARE DISEASES IS DEDICATED TO ADVANCING THE DEVELOPMENT OF TREATMENT AND DIAGNOSTIC OPPORTUNITIES FOR RARE DISEASE PATIENTS THROUGH SCIENCE-DRIVEN PUBLIC POLICY.

Describe the Organization's Program Activity:

Part 3 - Line 4a

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.


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.


THE EVERYLIFE FOUNDATION FOR RARE DISEASES IS A 501C3 NONPROFIT, NONPARTISAN ORGANIZATION DEDICATED TO EMPOWERING THE RARE DISEASES PATIENT COMMUNITY TO ADVOCATE FOR IMPACTFUL, SCIENCE-DRIVEN LEGISLATION AND POLICY THAT ADVANCES THE EQUITABLE DEVELOPMENT OF AND ACCESS TO LIFESAVING DIAGNOSES, TREATMENTS AND CURES. WE DO NOT SPEAK FOR PATIENTS. WE PROVIDE THE TRAINING, EDUCATION, RESOURCES AND OPPORTUNITIES TO MAKE THEIR VOICES HEARD. BY ACTIVATING THE PATIENT ADVOCATE, WE CAN CHANGE PUBLIC POLICY AND SAVE LIVES.


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Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$1,239,750
Fundraising events$0
Related organizations$0
Government grants $214,140
All other contributions, gifts, grants, and similar amounts not included above$3,977,006
Noncash contributions included in lines 1a–1f $0
Total Revenue from Contributions, Gifts, Grants & Similar$5,430,896
Total Program Service Revenue$0
Investment income $13,276
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $33,250
Net Gain/Loss on Asset Sales -$11,949
Net Income from Fundraising Events $0
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $5,479,237

Grants Awarded

Over the last fiscal year, Everylife Foundation For Rare Diseases has awarded $20,638 in support to 2 organizations.

Grant RecipientAmount

SF THEOLOGICAL SEMINARY

|

|

$10,538

GLOBAL GENES PROJECT

Org PageRecipient Profile

Aliso Viejo, CA

|

$10,100
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 4 grants that Everylife Foundation For Rare Diseases has recieved totaling $365,000.

Awarding OrganizationAmount
Silicon Valley Community Foundation

Mountain View, CA

PURPOSE: Health

$225,000
Pharmaceutical Research And Manufacturers Of America

Washington, DC

PURPOSE: General Contribution

$70,000
Biotechnology Innovation Organization

Washington, DC

PURPOSE: SUPPORT/CONTRIBUTION

$50,000
The Parent Project For Muscular Dystrophy Research Inc

Washington, DC

PURPOSE: RESEARCH PROGRAM- AWARD FOR GENETICS FELLOWSHIP

$20,000
View Grant Recipient Profile

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