EveryLife Foundation for Rare Diseases Announces Search for CEO to Lead New Era of Growth

WASHINGTON, Oct. 19, 2023 /PRNewswire/ -- EveryLife Foundation for Rare Diseases, a leading nonprofit organization dedicated to closing the innovation gap for rare diseases and ensuring equitable access to treatment and diagnosis opportunities, announces its search for a Chief Executive Officer (CEO) as the organization celebrates its 15th year of impactful service to the rare disease community.

In pursuit of scaling and expanding, with aspirations to double its budget and reach over the next 5-7 years, the Foundation seeks a visionary leader to navigate this exciting new phase. The Board of Directors decided to transition the Foundation's top post from an executive director to a CEO to focus intently on strategy and fundraising. The incoming CEO will report directly to the board and play a pivotal role in realizing the strategic vision for this era of growth.

Frank Sasinowski, Chair of the Board of Directors at EveryLife Foundation, expressed enthusiasm for the journey ahead: "We are excited to embark on this search for an innovative leader to guide us into the future. The incoming CEO will spearhead the development of fresh strategies and fundraising initiatives, paving the way for sustained progress."

The Foundation is in pursuit of a CEO who blends inspirational leadership with sophisticated management acumen. This dynamic leader will not only propel the organization in terms of culture, capability, and processes but also maximize its influence. Collaborating closely with the Foundation's executive team, the CEO will cultivate an innovative culture and ensure the organization's staff of 23 remains well-equipped to fulfill its mission.

Furthermore, the new CEO will actively engage with the community and foster collaborations with other professionals and industry stakeholders, reinforcing the Foundation's commitment to being an active and visible presence in the rare disease community.

More information about the CEO search is available at everylifefoundation.org/careers. Interested candidates are invited to send a resume and cover letter electronically to [email protected] with "CEO Application" in the subject line.

EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease 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. The Foundation provides training, education, resources, and opportunities to make patient voices heard, help change public policy, and save lives. Learn more: everylifefoundation.org

SOURCE EveryLife Foundation for Rare Diseases