Director of Scientific and Clinical Initiatives

The Dup15q Alliance is a 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 (Dup15q).

Founded in 1994, Dup15q Alliance has a clearly defined mission and vision, each developed with extensive family and caregiver input.

MISSION: We empower individuals living with Dup15q Syndrome and other rare diseases to reach their full potential by advancing breakthrough research and life-changing treatments, supporting families affected by dup15q, and promoting advocacy.

VISION: We envision a world where families, clinicians, and advocates collaborate to improve the quality of life for individuals with Dup15q and other related rare diseases.

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

About the Position:

The Director of Scientific and Clinical Initiatives is a full-time position. They are a key organizer and lead driver of our Scientific and Clinical Research Strategic Plan, which describes our path to learn, treat, and work towards a disease-modifying therapy for the symptoms of Dup15q syndrome.

The ideal candidate will be a passionate individual with strong written and verbal communication skills, especially in translating science to lay audiences. They will also have experience in the rare and/or neurodevelopmental disease

landscape.

Qualifications:

The candidate will have excellent project and time management skills. They will also be agile in their ability to prioritize based on the emerging opportunities and needs of the Dup15q community. While not a requirement, candidates with experience working alongside parents/caregivers, industry partners, or non-profit organizations will be prioritized.

Role and Responsibilities:

• Have extensive knowledge of current literature about the symptoms, clinical trials, molecular mechanisms of Dup15q, and potential therapeutic developments.

• Serve as a scientific or clinical liaison between our staff, Board of Directors, Science Subcommittee, and Professional Advisory Board (PAB) by presenting relevant updates semi-regularly.

• Communicate clearly and effectively with industry partners in the drug development space regarding clinical trial potential, progression, and outcomes.

• Communicate clinical trial information to families to encourage patient enrollment and promote scientific understanding.

• Collaborate with clinicians, industry partners, PAB, and other stakeholders to identify and communicate community needs from clinical trials.

• Write, submit, and advise on grant submissions for the future funding of Dup15q-related research.

• Provide guidance and leadership in framing Dup15q Alliance scientific priorities and derive a strategic roadmap.

• Act as the Dup15q Alliance representative to other institutions, including the NIH, FDA, pharma, biotech, etc.

• Collaborate with our clinical research network (the LADDER Learning Network – LLN), which we share with the Angelman Syndrome Foundation.

• Additional work with LLN includes facilitating research to gather data caregiver-reported data.
• Assist in the publication of findings from data within our LADDER database.

•Interact with other non-profit rare disease advocacy groups to identify synergistic areas for collaboration.

•Work with Alliance staff to develop and produce scientific and medical content for Alliance educational programs and updates to our community.

•Support clinicians and scientists studying Dup15q through administrative work, highlight compilation, grant or manuscript writing, and coordination of key personnel.

•Attend relevant conferences to remain abreast of Dup15q and related neurodevelopmental/seizure disorder research. 

Requirements:

◊ Ph.D./M.D./D.O. in a science or medical field.

◊ 2+ years’ experience in translational research.

• Neuroscience/neurodevelopment/neurogenetics strongly preferred.

◊ 2+ years of grant writing experience.

◊ 2+ years of clinical or basic science research experience beyond a graduate degree.

◊ Ability to convey basic science and medical terminology to a lay audience (our families and

donors).

◊ Exceptional written, oral, interpersonal, and presentation skills.

◊ Ability to effectively engage with researchers, clinicians, families, staff, and Dup 15q

community.

◊ Excellent project and time management skills.

◊ Collaborative, with the ability to work independently and as part of a geographically dispersed

team, interacting with other staff members virtually.

◊ Commitment to fostering/supporting diversity within the organization.

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

➢ Comfort with scientific, medical, and genetic concepts and knowledge of Dup15q

syndrome.

➢ Knowledge of animal models used in Dup15q research.

➢ Strong strategic thinking and analysis skills.

➢ Attention to detail, combined with organization to move projects forward.

➢ Ability to travel four times yearly.

➢ Understanding of translational research and design.

• Experience managing/engaging with clinical studies is preferred.

➢ Understanding of NIH and other federal policies.

➢ An avid interest in working with the rare disease community.

The Director of Scientific and Clinical Initiatives reports to the Executive Director of Dup15q Alliance.

They will work collaboratively with other current staff, including the Administrative Director, Business

Manager, Connections &Outreach Coordinator, Family Intake Manager, and Development and

Administrative. They also collaborate with the Director of the LLN, who is shared with the Angelman

Syndrome Foundation.

Base Pay: $100,000

Location:

This is a remote position. However, the Alliance has a mailing address and a small office in Matthews,

NC. Our Board and staff live in various locations around the country, and the Alliance encourages in-

person meetings when appropriate and if location/timing allows. This position involves some travel,

emphasizing the Dup15q Alliance/Angelman Syndrome annual science symposium and bi-annual

international family conference.

Application Process:

Apply through LinkedIn and must include a cover letter. You may also apply by submitting your resume and cover letter to carrie.howell@dup15q.org.

No phone calls, please. Dup15q Alliance is an equal-opportunity employer.

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