Portraits of Life With Hemophilia Showcased in Multimedia Exhibit

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by Mary Chapman |

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An immersive multimedia exhibit, which features portraits by renowned photographer Rankin, seeks to educate about life with hemophilia and the disease community’s hope for the future.

The exhibit, called “Portraits of Progress,” is a collaboration between biotherapeutics company CSL Behring and Rankin, a British photographer who has done portraits of notable celebrities, such as Kate Moss, Madonna, and David Bowie. This is the first in-person exhibition in three years for Rankin, whose formal name is John Rankin Waddell.

Touted as the first of its kind, the show features black-and-white portraits of several people who live with the blood disorder, in addition to caregivers and health professionals. It also includes personal narratives, archival images, and a timeline of key scientific discoveries, including the identification of hemophilia A and B in the 1940s through to current therapeutic advances, particularly in gene therapy.

The exhibit opened June 11 at 89 Crosby Street, New York City, and will run through June 19. It will tour the U.S. and Europe later this year, and can be viewed virtually.

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“As a photographer, I’ve gravitated towards campaigns which can make a difference,” Rankin said in a press release. “Hemophilia is something I thought I understood, but I realized there was so much to learn. Listening to these exceptional stories and learning about the extraordinary journey of this community was a true education and privilege. I hope this exhibition will provide greater awareness and understanding of hemophilia, and the incredible people within this tight-knit community.”

In addition to highlighting and celebrating the hemophilia community, the exhibit also aims to inspire and motivate patients.

A retired hematology nurse coordinator named Sue whose portrait and story are featured in the exhibit, said after 35 years working with the hemophilia community, it’s been amazing to witness the progress in both treatment and education.

“Due to medical and therapeutic advancements, people living with hemophilia who receive proper treatment are living longer than ever before and have the freedom to do more. We never know what the future holds, but I think looking at all the research and everything that is on the horizon, there’s going to be nothing but positive things for our bleeding disorder community,” she said.

In addition to early discoveries, the exhibition takes viewers from the 1950s and 1960s, when life expectancy for those with hemophilia was less than 20 years, through to the evolution of transformative treatments some 40 years later. It also showcases more recent advances, including prospects for a single-dose treatment.

“Driven by our promise to support those living with rare and serious diseases, CSL Behring has a long history of innovation and collaboration with the bleeding disorder community, whether through cutting edge treatments, or our programs that provide education, support and connection,” Bob Lojewski, senior vice president and general manager of North America Commercial Operations at CSL Behring, said.

“We are constantly impressed by this incredible group of people, and we hope that ‘Portraits of Progress’ will shine a spotlight on this vibrant and engaged community and inspire those who live each day with hemophilia,” Lojewski said.

CSL Behring recently donated 500 million international units of factor therapy to the World Federation of Hemophilia aid program. And last year, the biotherapeutics company acquired global rights to EtranaDez, a hemophilia B gene therapy currently being tested in an ongoing Phase 3 trial.