Global biotherapeutics leader CSL Behring and renowned portrait photographer Rankin have teamed up to launch ‘Portraits of Progress’, a multi-media campaign showcasing the stories and experiences of people living with hemophilia from the mid-twentieth century to today. This first-of-its-kind exhibition takes visitors through the remarkable pace of progress in the treatment of hemophilia, from the identification of hemophilia A and B in the 1940s, through treatment advances available today, and ongoing research focused on gene therapies for the bleeding disorder.
“I have been working with the hemophilia community for 35 years, and it has been amazing to see the progress that has been made both with treatment and education,” said a woman named Sue, retired Hematology Nurse Coordinator, whose portrait and story are featured in the exhibition. “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.”
‘Portraits of Progress’ is an immersive, multi-media exhibit designed to educate about life with hemophilia by documenting progress in our understanding of the condition and the community’s hopes for the future. Featuring portraits of individuals who live with hemophilia, caregivers and healthcare professionals shot by Rankin, along with personal stories, archival images, and a timeline of key scientific discoveries, viewers are taken from life in the 1950s and 1960s when life expectancy was less than 20 years, through the evolution of transformative recombinant therapies in the 1990s and 2000s, to the prospect of a single-dose treatment under investigation that could offer even further possibilities for patients in the future.
Opening on June 11 in New York City and touring in the U.S. and Europe later in the year, ‘Portraits of Progress’ will be Rankin’s first live exhibition in the U.S. in three years.
“As a photographer, I’ve gravitated towards campaigns which can make a difference,” said Rankin. “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.”
The exhibit is located at 89 Crosby Street, Soho, New York City and runs until June 19th from 10am to 6pm daily. The exhibition can also be viewed virtually at www.portraitsofprogress.com.
“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,” said Bob Lojewski, Senior Vice President and General Manager of North America Commercial Operations, CSL Behring. “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.”
Hemophilia is a rare disorder in which blood doesn’t clot in the typical way because it doesn't have enough blood-clotting proteins, called clotting factors. The two most common types of hemophilia are A and B. Hemophilia A is the most common type of hemophilia and is caused by a lack of blood clotting factor VIII, whereas hemophilia B is caused by a lack of factor IX (FIX). The more severe the condition, the less able a person is to form blood clots, making them more vulnerable to bleeding.
People with the condition are particularly vulnerable to bleeds in their joints, muscles, and internal organs, leading to pain, swelling, and joint damage. Current treatment includes life-long prophylactic infusions of clotting factor to temporarily replace or supplement low levels of the blood-clotting factor.
About Gene Therapy
In general, gene therapies are an innovative approach to treating medical conditions by introducing a functional, or working, gene into the body or by turning off or changing the gene that is causing the condition.
Current treatments for hemophilia work to temporarily replace or supplement low levels of blood-clotting factor, but gene therapy has the potential to restore near-normal blood clotting ability.
Gene therapy clinical trials for hemophilia are still ongoing and currently none are approved by the Food and Drug Administration (FDA). Investigational gene therapies aim to enable patients to create their own factor through a one-time infusion, potentially delivering lasting bleed protection for years. Gene therapy can potentially provide long-term benefits of sustained factor activity levels from a single administration of treatment, potentially reducing or even eliminating the need for regular, long-term prophylaxis.
Rankin is a British photographer, publisher, and film director. He is best known for work that is on the cultural cusp and leading future trends, producing rule-breaking campaigns.
As a photographer, Rankin’s portfolio ranges from portraiture to documentary. He has shot several high-profile musicians, actors, models and cultural icons.
As a publisher, Rankin co-founded the seminal magazine Dazed & Confused, and has since published over 40 books and founded the print and digital platform Hunger.
Rankin’s work has been published everywhere from his own exhibitions to Elle, Vogue, Esquire, GQ, Rolling Stone and Wonderland, and exhibited in galleries globally, including MoMA, New York, and the Victoria & Albert Museum, London.
About CSL Behring
CSL Behring is a global biotherapeutics leader driven by our promise to save lives. Focused on serving patients’ needs by using the latest technologies, we discover, develop and deliver innovative therapies for people living with conditions in the immunology, hematology, cardiovascular and metabolic, respiratory, and transplant therapeutic areas. We use three strategic scientific platforms of plasma fractionation, recombinant protein technology, and cell and gene therapy to support continued innovation and continually refine ways in which products can address unmet medical needs and help patients lead full lives.
CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. The parent company, CSL Limited (ASX:CSL;USOTC:CSLLY), headquartered in Melbourne, Australia, employs more than 25,000 people worldwide, and delivers its life-saving therapies to people in more than 100 countries. For inspiring stories about the promise of biotechnology, visit Vita CSLBehring.com/vita and follow us on Twitter.com/CSL Behring.
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