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.