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
What are the reviews and ratings of this charity?
Charity Navigator rating: 97% (Four-Star out of Four Stars)
The Everylife Foundation For Rare Diseases has achieved an impressive Four-Star rating on Charity Navigator, reflecting its strong commitment to accountability and financial health. With an outstanding score of 97 in Accountability & Finance, the organization demonstrates effective management of its funds, with a program expense ratio of 74.7%, which indicates that a significant portion of its resources directly supports its mission. The foundation also scored a perfect 100 in Leadership & Adaptability, showcasing its responsiveness and continuous improvement in serving the rare disease community.
The organization prides itself on a high level of governance, evidenced by its independent board consisting of 92% members who are not affiliated with the organization. This ensures a robust oversight structure, backed by well-documented policies, including conflict of interest and whistleblower protections. Additionally, the foundation's financial practices are commendable, with a minimal liabilities-to-assets ratio and a fundraising efficiency that indicates low costs in raising donations.
One notable strength is the foundation's commitment to feedback collection and usage, which scored 100 out of 100 points. This highlights its dedication to listening to the community it serves and adapting based on their input. Overall, the Everylife Foundation For Rare Diseases stands out as a highly efficient and transparent nonprofit, dedicated to advancing the interests of individuals affected by rare diseases.
This AI summary has been generated from information found on Charity Navigator.
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.
Heare 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:
- Compensation: $243,797
- Related: $0
- Other: $18,332
- Compensation: $233,456
- Related: $0
- Other: $15,338
- Compensation: $144,613
- Related: $0
- Other: $9,725
- Compensation: $130,486
- Related: $0
- Other: $8,504
- Compensation: $122,579
- Related: $0
- Other: $11,721
- Compensation: $112,779
- Related: $0
- Other: $16,030
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
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- Other: $0
- Compensation: $0
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- Other: $0
- Compensation: $0
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- Other: $0
- Compensation: $0
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- Other: $0
- Compensation: $0
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- Other: $0
- Compensation: $0
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- Other: $0
- Compensation: $0
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- Other: $0
- Compensation: $0
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- Compensation: $0
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- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
Official website here: www.everylifefoundation.org
Where can I find the form 990 for Everylife Foundation For Rare Diseases?
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.
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Impact
October, 2024
Everylife Foundation for Rare Diseases significantly impacts the landscape of rare disease treatment and diagnosis through its strategic initiatives and policy advocacy. By focusing on the needs of the rare disease community, the foundation brings together patient organizations, industry leaders, and other stakeholders to collaboratively address the challenges faced in developing effective therapies and diagnostic tools.
Through its Community Congress, the foundation ensures that policy priorities are aligned with the most pressing needs of patients and their families. This collaborative approach allows for the sharing of insights and expertise, enabling the identification of urgent policy issues that require attention. The Everylife Foundation is dedicated to advancing science-driven public policy, which not only influences legislative and regulatory frameworks but also enhances the overall well-being of individuals with rare diseases.
By giving a voice to the rare disease community and creating an environment conducive to innovation, the Everylife Foundation plays a critical role in advancing research, improving access to treatments, and ultimately transforming the lives of those affected by rare diseases. Their commitment to fostering dialogue and collaboration strengthens the collective efforts to tackle the unique challenges of rare diseases, making a lasting impact on public health and social equity.
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.
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.
- Investment Income: $31,173
- Gross Receipts: $5,817,282
Assets and Liabilities:
- Total Assets: $4,495,405
- Total Liabilities: $1,254,443
- Net Assets: $3,240,962
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Organization Details
Founding Year
2009
Phone
(202) 697-7273Principal Officer
Julia Jenkins
Main Address
1012 14TH STREET NW 500, WASHINGTON, DC, 20005
Website
www.everylifefoundation.orgNTEE Category
Code: G012 - Disease
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