Director, Programs & Community Engagement, Orphan Disease Center
Posted by University of Pennsylvania on October 15, 2019
The Perelman School of Medicine at the University of Pennsylvania is the oldest and one of the finest medical schools in the United States. Penn is rich in tradition and heritage and at the same time consistently at the forefront of new developments and innovations in medical education and research. Since its founding in 1765 the School has been a strong presence in the community and prides itself on educating the leaders of tomorrow in patient care, biomedical research, and medical education. http://www.med.upenn.edu/
Orphan diseases represent a collection of disorders that afflict fewer than 200,000 individuals for any single disease type, yet there are more than 7,000 distinct orphan diseases. The Orphan Disease Center (ODC) in the Perelman School of Medicine was founded in 2011 to promote and fund research in rare diseases globally, beyond Penn, making a difference for these under-served patient populations. A unique aspect of ODC is that it is a ‘Center without walls’ which sources and contributes to developing transformative therapies through the use of platform technologies and of research strategies that can be deployed across multiple rare disease programs. The main feature is a pilot grant program which provides $8M annually to over 35 global institutions.
We are currently seeking a Director, Programs & Community Engagement to design clinical development plans for multiple high-priority programs within the ODC.
Reporting to the Executive Director of the Orphan Disease Center (ODC), the Director, Programs & Community Engagement is responsible for managing multiple programs and initiatives to engage the research-focused rare disease community: community & patient engagement, external grant programs, philanthropic activities, communications and marketing.
As Director, Programs & Community Engagement, you will be responsible for overseeing and coordinating all community engagement and patient relations activities for the Orphan Disease Center (ODC) at the University of Pennsylvania. This includes leading efforts to identify, develop, improve, deliver, and execute patient engagement and outreach strategies for the ODC. Key responsibilities in this area include:
• Establish recognition within the rare disease community as a leader for the ODC.
• Partner with ODC leadership to identify, determine, review and implement appropriate outreach strategies to promote research community and patient engagement.
• Establish collaborative and productive working relationships with a wide range of community organizations, patient advocacy groups, local/global agencies, research community, key opinion leaders, and other key constituents to further goals surrounding patient advocacy and community outreach.
• Coordinate meetings and forums with rare disease community stakeholders as a method of engaging in bi-directional communication and awareness of the ODC.
• Lead efforts to translate strategy development into effective planning, development, execution, and evaluation of rare disease community engagement and program marketing initiatives, which includes the creation and maintenance of web pages for the ODC.
• Remain abreast of new developments in the communities we serve to identify potential business development or partnership opportunities.
You will provide oversight and accountability for the successful execution of MDBR and all MDBR-related events, several scientific symposia, think tank, and advisory board meetings per year, and multiple grant programs.
Additionally, you will supervise and manage a Project Coordinator to support you in the execution of the outlined objectives.
Bachelor’s degree with minimum of 5 to 7 years of professional experience or an equivalent combination of education and experience is required
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