Overview
What is Everylife Foundation For Rare Diseases?
The Everylife Foundation for Rare Diseases, located at 1012 14th Street NW, Washington, DC, is a nonprofit organization committed to improving the lives of individuals affected by rare diseases. Its mission is to foster the advancement of diagnostic and treatment opportunities through science-driven public policy. The organization achieves this goal by identifying pressing policy needs within the rare disease community, through its membership-based program, the Everylife Foundation Community Congress. This strategic advisory council comprises patient organizations, industry leaders, and other stakeholders, collaborating to address urgent policy issues. The foundation's programs and initiatives can be explored on their website, everylifefoundation.org. The Everylife Foundation currently employs 19 individuals in its mission to support the rare disease community.
Official website here: www.everylifefoundation.org
Is Everylife Foundation For Rare Diseases legitimate?
Everylife Foundation For Rare Diseases is a legitimate nonprofit organization registered as a 501(c)(3) entity. Everylife Foundation For Rare Diseases submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Here are some key statistics you may want to consider:
Executive Compensation: $262,129
Professional Fundraising Fees: $0
Other Salaries and Wages: $2,127,285
For more financial information, click here
Official website here: www.everylifefoundation.org
What is the mission statement of Everylife Foundation For Rare Diseases?
The Everylife Foundation for Rare Diseases is committed to promoting the advancement of treatment and diagnostic opportunities for patients with rare diseases through science-driven public policy. Their mission is centered around identifying and addressing the most pressing needs of the rare disease community through the Everylife Foundation Community Congress, which serves as a strategic advisory council, bringing together patient organizations, industry leaders, and other stakeholders. The foundation's policy priorities and initiatives are shaped by the Community Congress to effectively impact the rare disease community. More information about the foundation's programs can be found on their website.
Official website here: www.everylifefoundation.org
Who is the CEO of Everylife Foundation For Rare Diseases?
Julia Jenkins is the President & Executive Dir. of Everylife Foundation For Rare Diseases.
Official website here: www.everylifefoundation.org
What is the revenue of Everylife Foundation For Rare Diseases?
Everylife Foundation For Rare Diseases's revenue in 2022 was $5,789,261.
Official website here: www.everylifefoundation.org
Who are the executives of Everylife Foundation For Rare Diseases and what are their salaries?
The average compensation at Everylife Foundation For Rare Diseases during 2022 was $125,759. There are 19 employees and 15 volunteers at Everylife Foundation For Rare Diseases.
Here are 19 key members and their salaries:
- Julia Jenkins (President & Executive Dir.) [Trustee/Director]
- Annie Kennedy (Policy & Advocacy)
- Megan Pinegar (Coo)
- Jamie Sullivan (Sr. Dir Of Policy)
- Mary Roth (Communications)
- Britta Dornan (Communications)
- Mark Dant (Chairman) [Trustee/Director]
- Frank Sasinowski (Vice Chairman) [Trustee/Director]
- Vicky Seyfert-Margolis (Treasurer) [Trustee/Director]
- Jennifer Bernstein (Secretary) [Trustee/Director]
- Amrit Ray (Director)
- Ritu Baral (Director)
- Emil Kakkis (Director)
- Richard Finkel (Director)
- Stephen Groft (Director)
- Abbey Hauser (Director)
- Lisa Carlton (Director)
- Cristina Casanova Might (Director)
- Merrill Friedman (Director)
Official website here: www.everylifefoundation.org
Where can I find the form 990 for Everylife Foundation For Rare Diseases?
The Everylife Foundation For Rare Diseases’s most recent form 990 was submitted in 2022 and can be accessed here
Official website here: www.everylifefoundation.org
Learn more at the official website: www.everylifefoundation.org
Mission Statement of Everylife Foundation For Rare Diseases
The Everylife Foundation for Rare Diseases is committed to driving advancements in the development of treatments and diagnostic opportunities for patients suffering from rare diseases. They achieve this goal through science-driven public policy, ensuring that their efforts aligned with the most pressing needs of the rare disease community. The foundation identifies its policy priorities and initiatives through the Everylife Foundation Community Congress, a membership-based program that brings together patient organizations, industry leaders, and other stakeholders to collaborate and provide strategic advice on pressing policy issues impacting the rare disease community.
Impact
This information is meant to be a general summary of Everylife Foundation For Rare Diseases. Please take the time to review official sources before making any decisions based upon the content provided here.
Thursday, August 15, 2024
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. The foundation's policy priorities and initiatives are identified by the EveryLife Foundation Community Congress to ensure that their efforts reflect the most pressing needs of the community. As a membership-based program, the Community Congress collaborates with patient organizations, industry leaders, and other rare disease stakeholders to provide advice and insight on urgent policy issues impacting the rare disease community. The foundation's impact lies in advocating for policies that improve the lives of those affected by rare diseases and working towards increased access to treatments and diagnostics.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2022.
- Assets and Liabilities:
Organization Details
Founding Year
2009
Phone
(202) 697-7273
Principal Officer
Julia Jenkins
Main Address
1012 14TH STREET NW 500, WASHINGTON, DC, 20005
Website
www.everylifefoundation.org
NTEE Category
Code: G012 - Disease
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