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'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.
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'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
'Driven by our promise to support those living with rare and serious diseases,
About 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
About Rankin
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,
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Etanjalie Ayala
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Email: Etanjalie.Ayala@cslbehring.com
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