Everylife Foundation For Rare Diseases
- Assets
- $5.8m
- Revenue
- $6.8m
- Investments
- $0.0
- Employees
- 28
- Location
- Washington, DC
- Founding
- 10/2009
- Data as of
- 12/2023
- EIN
- 26-4614274
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 12/2023, Everylife Foundation For Rare Diseases employed 28 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 12/2023, Everylife Foundation For Rare Diseases generated $6.8m in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 21.0% each year . All expenses for the organization totaled $6.1m during the year ending 12/2023. While expenses have increased by 19.9% 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.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
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.
PATIENT PROGRAMS AND OPPORTUNITIES FOR PATIENT ENGAGEMENT AND COMMUNITY INCLUDING AN ARTIST CONTEST, COLLABORATIVE WORKSPACE, AND COMMUNICATIONS TOOLS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Julia Jenkins President & Executive Dir. | OfficerTrustee | 40 | $273,948 |
Anne Kennedy Policy & Advocacy | 40 | $250,269 | |
Megan Pinegar COO | 40 | $153,654 | |
Jamie Sullivan Sr. Dir Of Policy | 40 | $135,524 | |
Shannon Von Felden Sr Director Of Adv | 40 | $117,437 | |
Edward Brasfield Sr Dir Of Develop | 40 | $120,732 |
Outside Vendors & Contractors
| Vendor Name (Service) | Service Year | Compensation |
|---|---|---|
Adovacy Associates Consulting | 12/30/23 | $102,444 |
Faegre Drinker Biddle & Reath Consulting And Lobbying | 12/30/23 | $143,535 |
Stairwell D Llc Consulting | 12/30/23 | $102,279 |
Tufts Medical Center Consulting | 12/30/23 | $262,500 |
Continental Building Limited Partnership Rent | 12/30/23 | $271,673 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $1,877,250 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $4,766,228 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $6,643,478 |
| Total Program Service Revenue | $0 |
| Investment income | $52,318 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $88,895 |
| Net Gain/Loss on Asset Sales | -$381 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $6,794,644 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $433,175 |
| Grants and other assistance to domestic individuals. | $13,197 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $296,175 |
| Compensation of current officers, directors, key employees. | $81,380 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $2,117,996 |
| Pension plan accruals and contributions | $134,883 |
| Other employee benefits | $273,594 |
| Payroll taxes | $180,162 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $2,337 |
| Fees for services: Accounting | $58,959 |
| Fees for services: Lobbying | $116,164 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $5,734 |
| Fees for services: Other | $852,401 |
| Advertising and promotion | $10,126 |
| Office expenses | $37,127 |
| Information technology | $226,050 |
| Royalties | $0 |
| Occupancy | $244,128 |
| Travel | $530,306 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $393,955 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $8,921 |
| Insurance | $7,499 |
| All other expenses | $0 |
| Total functional expenses | $6,057,115 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $2,783,412 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $525,050 |
| Accounts receivable, net | $387 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $149,331 |
| Net Land, buildings, and equipment | $9,857 |
| Investments—publicly traded securities | $1,196,875 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $1,141,950 |
| Total assets | $5,806,862 |
| Accounts payable and accrued expenses | $334,850 |
| Grants payable | $0 |
| Deferred revenue | $338,000 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $7,675 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $1,127,290 |
| Total liabilities | $1,807,815 |
| Net assets without donor restrictions | $2,320,714 |
| Net assets with donor restrictions | $1,678,333 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $5,806,862 |
Grants Awarded
Over the last fiscal year, Everylife Foundation For Rare Diseases has awarded $20,638 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
GLOBAL GENES PROJECT | | | $10,100 |
SF THEOLOGICAL SEMINARY | | | $10,538 |