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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…
Supporters of World Hemophilia Day, on April 17, are hoping to raise awareness about the bleeding disorder with events planned globally and on social media, and to advocate for sustainable and equitable access to care and treatment. The annual event, which is organized by the World Federation of Hemophilia…
People nationwide are marking Bleeding Disorders Awareness Month, set aside each March, to call attention to disorders such as hemophilia and von Willebrand disease, and the more than 3 million U.S. residents thought to be living with them. Across the U.S., patients, caregivers, and activists are running and walking…
Those wishing to memorialize family members or friends who have lost their lives due to an inherited bleeding disorder like hemophilia, and who want to help empower and educate future patients, are invited to create a video for the World Federation of Hemophilia (WFH) 2022 World Congress. Specifically, the…
Next year’s Hemophilia Federation of America’s (HFA) monthly educational series for patients, caregivers, and healthcare providers opens on Jan. 18 at 7 p.m. EST with a presentation about joint replacements for bleeding disorder patients. The speaker for the first of the 12 HFA webinars planned for 2022 is James…
Garrett Hayes, who is studying medicine in Texas and has a severe form of hemophilia A, is the first recipient of the National Hemophilia Foundation’s (NHF) Jason Fulton Memorial Scholarship. The scholarship honors the memory of Jason Fulton, a hemophilia patient who died in 1995 at age…
A partnership between Emmes and MedGenome seeks to accelerate development of genomics-powered therapies for people with rare diseases, such as hemophilia. The companies plan to combine patient data into custom disease registries to improve research design and help with patient recruitment for clinical trials. In addition, they…
Jim Christensen Jr., a hemophilia A patient who has supported the National Hemophilia Foundation (NHF) for more than three decades, has received the Lester A. Rosen Humanitarian and Achievement Award, given annually by Ameritas, for which he is an independent financial representative. With the award, the insurance company…
An online academic training program has been launched globally for people interested advocating for bleeding disorders care and treatment in their respective countries, as part of a partnership between the World Federation of Hemophilia (WFH) and the New York University (NYU) Robert F. Wagner…
Ten U.K. families who are members of the Haemophilia Society have the chance to enjoy a free, virtual Camp in the Cloud experience offered by Over The Wall, a nonprofit specializing in activity camps for children living with serious disorders. The places, each worth £150 (about $206), are available on a…
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