Chief Executive Officer, EveryLife Foundation

The EveryLife Foundation for Rare Diseases (ELFRD) 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. ELFRD has a staff of 23 full time employees and an annual budget of over 6.8 million.

ELFRD seeks a new Chief Executive Officer (CEO) as the organization celebrates its 15th year, ELFRD is looking to scale and multiply the impact of its work doubling its budget over the next 5-7 years. The new CEO will report to the Board of Directors and work closely with the board to implement the strategic vision of a new era of growth.

This executive will lead the organization while being focused on closing the innovation gap for rare diseases and ensuring patients have equitable access to treatment and diagnosis opportunities. Their focus will be on developing new strategies and fundraising paths through long-term strategic planning and execution.

The CEO will combine inspirational leadership and sophisticated management abilities. They will advance the organization in terms of culture, capability, processes, and impact. While working closely with the organization’s executive team, the CEO will inspire innovation and ensure that the organization is continually well equipped to advance its mission of growing the organization’s image by being active and visible in the community and working closely with other professionals and industry.

The CEO will serve as a spokesperson and lead point person to promote and/or impact ELFRD’s mission.

Principal Duties And Responsibilities

The major responsibilities of this position include, but are not limited to:

  • Resource Development – The CEO is charged to drive key results in fundraising: to help identify, cultivate and solicit prospective donors including high net worth individuals, private foundations and corporate funding sources; to leverage personal and professional contacts and relationships of the Board and supporters into transformational fundraising opportunities; to explore alternative/earned revenue streams; and to promote a culture of growth and engagement in the organization, at both the staff and Board level.
  • Increase the Visibility and Reputation of ELFRD – The CEO is on the front line every day representing ELFRD in a manner that creates a robust, trusted leadership image. The CEO is an exceptional leader and communicator and forms important partnerships representing ELFRD in a manner that creates a robust, trusted leadership The CEO is an exceptional leader and communicator and forms important partnerships throughout all relevant sectors and organizations.
  • Organizational Results – The CEO is responsible for the overall results of ELFRD. The CEO works closely with the staff and Board to craft and adapt strategic initiatives that aim to achieve important results, including raising the funds to support ELFRD, ensuring the efficacy of our programs, expanding the scale of our work, and enhancing the reputation of ELFRD by remaining true to the The CEO will establish and build relationships with top leaders, including those representing the highest levels in business, government, education, and non-profit sectors. The CEO will play a lead role in engaging new talent to serve on the Board and as Advisors.
  • Strategic Management – The CEO serves as the principal resource to the Board and gives strong direction in and coordination/alignment of all ELFRD’s strategic activities and The CEO is expected to have the vision required to steer ELFRD’s course into the future and the strategic ideas to move the organization forward, defining organizational strategies and working plans, as well as responsibilities and accountabilities.
  • Organization Management – The CEO is accountable for building and leading a high performing staff, Board, and advisors. The CEO will set the tone and establish the culture of the organization as one which is dedicated to its mission, maintains the highest level of excellence.


The Board seeks candidates with the following competencies:

  • Exemplary Executive Leadership. The CEO will be a warm and engaging leader who is accessible and listens to all viewpoints, demonstrates confidence and has a positive The CEO must be a highly accomplished relationship builder, comfortable in developing strategy and achieving buy-in from staff and Board and disciplined in executing plans and encouraging accountability. The CEO will promote the compelling mission, vision, values and strategic goals of ELFRD. The CEO will actively engage with other leaders, and funders in the field, to support existing collaborations and to envision new ways of working together in support of ELFRD’s mission. The CEO must see the big picture – managing current issues while thinking long term. The CEO will be decisive in action, adaptable, humble, and accountable.
  • Ability in Fundraising and Resource The CEO must identify, engage and steward donors and seek gifts of significance from various sources including but not limited to industry and institutional funders. Entrepreneurial and attuned to donor interests and concerns, the CEO will inspire fundraising involvement from the Board and will direct practices in donor development, as well as cultivation of additional/alternative revenue streams, to enhance and improve the organization’s funding potential. The CEO will reach out and cultivate new potential donors at all levels and work closely with Board, Advisors, and other senior staff to generate funding opportunities.
  • Expertise in The CEO is principally responsible for supporting and nurturing communication internally, among staff, Board, and Advisors, and for developing respect and engagement from members of the community and referrals from the Board. CEO will be the principal source of contact for Board, donors, and influencers and therefore must be able to gain the respect, trust, and support of those various constituencies.
  • Fiscal Management. The CEO must plan for financial stability and sustainability in partnership with the Board Finance A key to this is having the knowledge of organizational finances, the ability to establish and oversee a realistic budget, and the aptitude to use timely financial statements to guide and oversee organizational performance.
  • Marketing and The CEO, together with staff, will work to build the visibility and credibility of ELFRD through strategic communications and the development of new opportunities to showcase ELFRD’s policy work; building coalitions, partnerships and collaborations with outside organizations. Raising the profile of ELFRD throughout the community is paramount.
  • Sound Staff Management. The CEO will support a culture of inclusion, opportunity, and accountability in the work environment, inspiring, engaging, and empowering the professional staff of ELFRD. By selecting, developing, and motivating staff, the CEO will foster innovation, teamwork and collaboration to ensure that goals are established, resources appropriately allocated, and results are achieved.

The ideal candidate will have:

  • Passion for and commitment to ELFRD unique mission and the ability to inspire others to partner in support of that mission.
  • A minimum of a bachelor’s degree with 5+ years of strategic leadership and management experience in the public, private, or non-profit sector. An advanced degree MPH or MBA and experience in public policy are preferred.
  • A proven track record in successfully growing revenue and generating transformational philanthropic support.
  • A proven record of and genuine interest in successfully building trusted relationships with and among diverse constituencies and stakeholders.
  • A successful track record of working with a board of trustees and understanding the Patient advocacy world.
  • Exceptional leadership and communications skills.

More Information

ELFRD values a diverse workplace and strongly encourages women, people of color, LGBTQ+ individuals, people with disabilities, members of ethnic minorities, foreign-born residents, and veterans to apply. ELFD is an equal opportunity employer. Applicants will not be discriminated against because of race, color, creed, sex, sexual orientation, gender identity or expression, age, religion, national origin, citizenship status, disability, ancestry, marital status, veteran status, medical condition or any protected category prohibited by local, state or federal laws.

To Apply
To apply, submit a resume and cover letter electronically to [email protected] with “CEO Application” in the email title.