Rare Disease Theater Project

Bringing Awareness to Rare Diseases through Theater

The University's Center for Orphan Drug Research and Theater Arts and Dance Department—in collaboration with community members diagnosed with rare diseases—are producing a play that examines the challenges of those living with rare disorders. Over 7,000 diseases are considered rare, affecting one in ten Americans and their families who face few available effective treatments. The project's goal is to help a state-wide audience gain greater awareness and deeper understanding of the medical, economic, and social challenges facing people with rare diseases. The play will involve UMN students, staff, and faculty; individuals and family members affected by rare diseases; and community organizations.

This work will involve three phases: developing/adapting the play; a spring course with guest speakers in which actors will perform short scenes; and touring the play at various venues.

To share a personal story for the project, contact Erica Barnes at demo0050@umn.edu. To host the play or participate artistically in the production, contact Luverne Seifert at seife014@umn.edu.

Who is Involved

College of Pharmacy

Jim Cloyd, PharmD, Director of Center for Orphan Drug Research (CODR)
Lisa Coles, MS, PhD, Associate Director of Clinical Pharmacology and Pharmacometrics, CODR
Lori Endsley, Administrative Associate, CODR
Reena Kartha, MS, PhD, Associate Director of Translational Pharmacology, CODR
Robert Kriel, MD, Associate Director of Clinical Research, CODR
Paul Ranelli, MS, PhD, Professor, Department of Pharmacy Practice and Pharmaceutical Sciences

College of Liberal Arts

Sonja Kuftinec, PhD, Department of Theatre Arts & Dance
Luverne Seifert, Head of BA Theatre Performance, Department of Theatre Arts & Dance

Rare Disease Advisory Council

Erica Barnes, Administrator