Rare Disease Theater Project

RARE: Stories of Dis-ease

Video thumbnail to RARE trailer

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 in summer/fall 2022.

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.eduIf you would like to show your support for this special collaboration, you can make a gift here.

Creative Collaborations

The U of M Department of Theater Arts and Dance offered a Creative Collaborations course this spring. The class was led by instructors Luverne Seifert, Head of BA Theater Performance and Sonja Kuftinec, Professor of theater.  The class featured medical experts, testimonies by people who have rare diseases and their family members, in conjunction with the development of the play. The play, an adaptation of the Greek tragedy, Philoctetes, was then developed by the students and performed on Feb 25-26, 2022 at the Experimental Theater in Rarig Center on the West Bank of the University of Minnesota Campus. Click here to see the playbill. Kevin Kling, best known for his popular commentaries on National Public Radio’s All Things Considered and his storytelling stage shows like Tales from the Charred Underbelly of the Yule Log, also collaborated on the production.

View Playbill

Who is Involved

Kevin Kling, playwright

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