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