Rare Disease Theater Project

The University's Center for Orphan Drug Research and Theatre Arts and Dance Department—in collaboration with rare disease community members—have produced 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 show creators adapted the Greek tragedy, Philoctetes, to tell the story of the challenges faced by people diagnosed with a rare disease.

Philoctetes was a warrior noted in the Iliad, who was on his way to the Trojan War when a serpent bit him. The cries of pain from his wound were so great and the smell so noxious that he was abandoned on an island by his countrymen to live his life in isolation. The theme of abandonment and isolation resonate strongly with people who have a rare disease as well as their families and loved ones.

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, is the author of the play. Kling shared, “This production has truly been a passion project for all of us and has been woven from the accounts of so many courageous individuals who have lived the experience of rare disease and who have personally shared their stories with us.”

Luverne Seifert, Head of BA Theater Performance at the University of Minnesota directed, along with dramaturg and University of Minnesota theater professor, Sonja Kuftinec. The play had eight performances in cities across Minnesota, Wisconsin, and North Dakota from October 8-23, 2022. This project was made possible thanks to the generosity of many sponsors and donors.