Mary Chapman, features writer —

A global survey of more than 2,700 hemophilia patients, caregivers, and healthcare providers, which aimed to uncover the daily challenges of living with the rare blood disorder or caring for those who do, found that many patients regularly hide their symptoms — including from their doctors. “More than…

With an emphasis on patient advocacy, supporters of World Hemophilia Day will participate in a variety of activities on April 17 to heighten awareness of the disease and other bleeding disorders that are thought to affect 1 in 10,000 people globally. The World Federation of Hemophilia (WFH) organizes the…

Conditions like hemophilia and von Willebrand disease are thought to affect more than 3 million U.S. residents. Across the country, patients, caregivers, advocates, and other supporters are coming together this month for Bleeding Disorders Awareness Month (BDAM) to participate in conversations and webinars, and share information about key community…

AvevoRx is entering the bleeding disorders market with a program aimed at addressing the dearth of accessible, personalized specialty infusion and pharmacy services for people with hemophilia and related conditions. The North Carolina-based company, founded last year, provides specialty infusion pharmacy services in several states to at-home patients who have…

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…