Initiating the Search for the Next Director of the Orphan Disease Center
June 6, 2025
The Perelman School of Medicine (PSOM) at the University of Pennsylvania and Children’s Hospital of Philadelphia (CHOP) are seeking exceptional internal candidates for the role of Director of the Orphan Disease Center (ODC)—a nationally and globally recognized hub for rare disease research, collaboration, and advocacy.
About the ODC:
Founded in 2011, the ODC is a unique partnership between PSOM and CHOP that unites leading experts in basic, translational, and clinical research to accelerate breakthroughs in rare diseases affecting fewer than 200,000 individuals in the U.S. Through its Centers of Excellence—including those for Mucopolysaccharidosis Disorders, Castleman’s Disease, and CDKL5 Deficiency—the ODC drives discovery, shapes therapeutic development, and fosters partnerships with foundations, clinicians, scientists, patients, families, and industry. Signature initiatives such as The Million Dollar Bike Ride and national collaborations amplify its impact, advancing science and advocacy on a global scale.
About the Role:
The Director of the ODC will set a visionary course for the Center’s future, providing strategic leadership for research, funding, and advocacy initiatives. This role will:
- Lead interdisciplinary research programs integrating efforts across PSOM, CHOP, and external partners.
- Expand the ODC’s Centers of Excellence and foster collaboration among clinicians, scientists, industry, and advocacy groups.
- Drive clinical and translational research with a patient-centered focus.
- Manage and grow grant funding, philanthropic support, and industry partnerships to sustain and expand the ODC’s impact.
- Lead and inspire a dedicated team of staff and researchers, advancing the ODC’s mission of discovery and patient support.
About the Ideal Candidate:
We seek a visionary leader with:
- A national or international reputation in rare disease research and translational medicine.
- An MD, PhD, or equivalent, qualifying for a standing faculty appointment at the Associate Professor or Professor rank at PSOM.
- Demonstrated success in securing grant funding, building strategic collaborations, and leading complex research programs.
- A track record of fostering innovation, collaboration, and engagement with diverse stakeholders, including patients, families, and advocacy organizations.
Your Vision Matters:
The next Director will shape the future of the ODC, ensuring it continues to break barriers in research, expand its reach, and remain a vital resource for the rare disease community worldwide.
Apply Now:
Internal candidates are invited to apply by submitting a curriculum vitae, a letter of interest, and a vision statement outlining your aspirations for the ODC’s next chapter. Please send your materials to: Kya Hertz, Special Projects Manager, Office of the Dean, khertz@upenn.edu by July 7, 2025.
Jonathan A. Epstein, MD
Dean, Raymond and Ruth Perelman School of Medicine
Executive Vice President, University of Pennsylvania for the Health System