Thanks to our dear friend, Professor of Social Pharmacy Dr. Paul Ranelli, for sharing links to a play and documentary about rare diseases.
“RARE: Stories of Dis-ease” is a play about the often-hidden experiences of people with rare diseases, told from the perspectives of patients and their families. The play’s last performance by the Sod House Theater production company was professionally filmed and is available on Youtube.
Dr. Ranelli, from University of Minnesota College of Pharmacy Duluth, visited “10 Minutes to Better Patient Communication” to talk about RARE. You can hear that interview here.
1 in 10 people have a rare disease, Dr. Ranelli said, and yet very few people have the same rare disease. Shining light on this complex but often-hidden reality was one of the motivations behind the making of RARE.
RARE, Dr. Ranelli explains, was produced as a collaboration with patients who have rare diseases and their families; UMN students; faculty at UMN College of Pharmacy Center for Rare Diseases and Drugs; faculty at the Theater Department at the University of Minnesota Twin Cities; and professional playwright Kevin Kling.
Dr. Ranelli explained, “on the last performance of the show in Fargo, North Dakota, it was filmed with two cameras. They mic’ed the actors” so that the public could appreciate RARE. View a recording of the live performance in Fargo ND.
The American Association of Colleges of Pharmacy featured RARE in a recent article, describing its purpose “to relate the story of orphan drugs and rare diseases, conveying the pain of disease and relief brought by care and community.”
As compelling as the play itself is the collaboration that made it possible. Fortunately, that story is available for us to see:
This documentary was produced and edited by Kyra Rahn, a videographer student at UMN. Thanks to Kyra, we can view the documentary about the creation of RARE.
Thank you to Dr. Ranelli for sharing this information with us! You can also hear Dr. Ranelli’s interview about the importance for health professionals to recognize patients as experts.