Rare Disease Theater Project

RARE: Stories of Dis-ease

Reserve your tickets today! Show description, dates, locations and times can be found here. Tickets are free, but you must reserve your seats by making a reservation.

Video thumbnail to RARE trailer

The University's Center for Orphan Drug Research and Theatre Arts and Dance Department—in collaboration with rare disease community members—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 delays in diagnosis and 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, psychologic, and social challenges facing people with rare diseases. Well-known author, Kevin Kling, is the playwright. The production will be directed by Luverne Seifert, Head of BA Theatre Performance, and Sofia Kuftinec, his colleague in the Department of Theatre Arts & Dance. The play is expected to have eight performances in cities across Minnesota from October 8-23, 2022.

We have raised funds to produce the play and tour it across the state of Minnesota this fall, but need your help to secure the additional funds necessary to create a professional-grade video documentary that will include a performance along with commentary from the creators of the play, patients & families, and health care experts. With a professional recording, we could tell the stories of people with rare diseases to a national audience, inspiring action to find the cures we need. Your gift, of any size, will give voice to the stories of rare disease that too often go untold. Thank you for your generosity! 

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

Thank you to the sponsors and donors who helped make this production possible! 

Acadia Pharmaceuticals; Alexion Pharmaceuticals; John Ballantyne; Fairview Pharmacy Services; Hastings Prescott Arts Council; Hyman; Phelps & McNamara; Kristin Janke and Todd Sorenson; National Institutes of Health via the Translational Science Institute; Orchard Therapeutics; RegenXBio; Takeda Pharmaceuticals USA, Inc.; University of Minnesota College of Pharmacy; University of Minnesota Imagine Fund; University of Minnesota Medical School; University of Minnesota Morris - Campus Activities Council; University of Minnesota Office of Academic Clinical Affairs; Upsher-Smith Laboratories, LLC; Delores Varin; and Donald and Lynda Welage