Executive Director, RARE Disease Non-profit


Executive Director

Dup15q Alliance



Dup15q Alliance is seeking an executive director to continue our exceptional service to individuals with Dup15q syndrome and their families, and lead us forward, through expanded fundraising, to drive research in developing therapeutics to treat the symptoms of Dup15q and other related rare diseases.


About Dup15q Alliance

The Dup15q Alliance is a $750k/year revenue rare disease nonprofit 501(c)(3) organization that is the leading global provider of family support, education, advocacy, research, and clinical support for individuals with duplication 15q syndrome. Founded in 1994, Dup15q Alliance’s mission and vision are:



We empower individuals living with Dup15q Syndrome and other related rare diseases to reach their full potential by advancing breakthrough research and life-changing therapeutic treatments, supporting families and promoting advocacy.



We envision a world where families, clinicians and advocates enable Dup15q individuals to thrive.


The Alliance is organized and operated exclusively for charitable, scientific, research and educational purposes. 



The Alliance has a mailing address and small office in Highland Park, Illinois.  However, it is not necessary to live in that city because we conduct much of our work activity on line.  Our staff live in a variety of locations around the county and work together via electronic conferencing.  The board has monthly meetings including two face-to-face meetings each year. This position involves some travel, and it might be beneficial to live near a major airport.


About the Position

The Dup15q Alliance is entering our next phase of growth. We are in the process of making a significant transition to become even more actively involved in promoting research, including projects directed at identifying possible therapeutics to treat Dup 15q Syndrome. We seek to continue to grow our organizational competence and quadruple our fundraising over the next five years to achieve these goals. A successful candidate must show the experience and leadership capabilities required to accomplish this transition.


The incoming Executive Director will inherit a unique and service oriented organization, known for empowering individuals and families through education and advocacy, supporting cutting edge scientific research, and facilitating top quality medical care and information sharing.




The priorities for the first 12 to 18 months of the Executive Director’s tenure include:

  • assisting the board in conducting strategic interviews with potential and current donors
  • conducting a major capital campaign with the goal of providing start-up funding for therapeutics research
  • encouraging and participating in regional/state/international family gatherings to rekindle connections as we emerge from pandemic restrictions
  • working with the new CMO/SCO of the 15q Clinical Research Network (shared with Angelman Syndrome Foundation) to produce a range of informational materials on best practices and standard of care for both families and family physicians.


The Executive Director reports to the Board of Directors, and all staff report to the Executive Director.  Current staff includes:  Administrative Director, Support Services Director, Operations Manager, Communications Coordinator, and 15q Network Coordinator.


Key Responsibilities

The Executive Director provides strategic leadership to the organization and, in partnership with the Board of Directors, oversees its day-to-day operations by fulfilling the following key responsibilities:


  • Together with the Board of Directors, develop and pursue the organization's mission, strategic plan, and annual as well as future goals and objectives.
  • Oversee programs, operations, and business plans with the twin foci of providing support for our Dup15q families and advancing research on the Dup15q syndrome, with an eye to potential treatments.
  • Ensure non-profit compliance with regard to taxes, the donation process, and state and federal law.
  • Maintain a strong Dup15q Alliance brand through all communications, including web presence, internal and external communications, public relations, event planning/management, and marketing.
  • Be the initial point of contact for the Dup15q Alliance with partner organizations and individuals.
  • Oversee the growth of the Alliance, both within the US and through international collaboration.
  • Supervise, lead, coach, and develop the Dup15q Alliance team, tracking progress and measuring success in a way that can be effectively communicated to the Board and other stakeholders.
  • Actively engage and energize with Dup15q Alliance volunteers, committees, alumni, partnering organizations, funders, and other constituents.
  • Participate in all Dup15q Board of Director meetings, including presenting the Executive Director’s monthly report.
  • Serve as a member of the Board’s Finance Committee and Executive Committee.
  • Direct the preparation of the annual budgets and any additional budgets required with the approval of the Board.






The ideal candidate for this position will share our community’s dedication to bettering the lives of people with Dup15q syndrome and their families.


Requirements for this position include:

  • Bachelor’s degree. An advanced degree is preferred.
  • Proven management experience, preferably with non-profit organizations, including the ability to coach staff, manage, and develop high-performance teams, set and achieve strategic objectives, and manage a budget.
  • Track record of effectively leading and nationally and/or internationally scaling a performance- and outcomes-based organization and staff.
  • Exceptional written, oral, interpersonal and presentation skills, and the ability to effectively interface with senior management, Dup 15q board members and staff.
  • Commitment to fostering/supporting diversity within the organization.



The successful candidate will bring a variety of experiences and attributes to Dup15q Alliance, including some:

  • Comfort with scientific, medical, and genetic concepts.
  • Marketing, public relations, and/or fundraising experience, with the ability to engage a wide range of stakeholders and cultures.
  • Some event planning/management experience.
  • An avid interest in working with the rare disease community and to improve the lives of individuals living with Dup15q.

Application Process

To apply, send an email with your resume, a cover letter detailing your qualifications [and salary requirements], and your references to Alliance Board Chair David Gifford at David.Gifford@dup15q.org   Application deadline is 30 June 2021. 

Dup15q Alliance is an equal opportunity employer.

 For more information about the Alliance, please visit www.dup15q.org.

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