CSL Behring will donate 500 million international units (IUs) of coagulation factor therapy to the World Federation of Hemophilia (WFH) in an effort to promote reliable access to treatment for bleeding disorders, including hemophilia, across more than 60 developing countries. The donation marks the fifth multiyear…

Last week, my wife, Cazandra, my youngest son, Caeleb, and I attended the annual meeting of the Hemophilia Federation of America, held in San Antonio. The grassroots, national organization promotes the health and well-being of those who manage chronic bleeding disorders. While attending the conference, we engaged with…

I sat in a hotel ballroom with hundreds of people who gathered to pay tribute to their loved ones. The names and pictures of the dearly departed appeared on giant screens at the front of the room. Many people had their cellphones ready, anxiously waiting to capture the image…

Believe Limited, continuing a partnership with BioMarin Pharmaceutical and working with the Foundation for Art & Healing, announced plans to produce a documentary film on the everyday challenges and victories of living with a bleeding disorder. The digital content production company, again with the support of BioMarin, produced “…

Factor VIII (FVIII) levels in the bloodstream of men with severe hemophilia A treated with the investigational gene therapy Roctavian appear to be influenced by regulatory molecules involved in F8 gene activity and FVIII protein folding and release, a study reveals. Researchers also found a dose-dependent relationship between…

I recently had the honor of interviewing bodybuilder L.A. Aguayo over Zoom. He is 34 years old, has severe hemophilia B, and recently took second place in an international bodybuilding competition, the Arnold Amateur. I highly recommend his inspirational autobiography, “Finding Purpose in the Pain.” In his book,…

Bone mineral density — the amount of minerals in bone tissue — is markedly lower in children with moderate and severe hemophilia than their healthy peers as a result of recurrent bleeding episodes that damage their joints, according to a small, single-center study in India. Preventive, or prophylactic, treatment was…

This past week my adult son, Julian, made a decision that I didn’t like. I wanted badly to tell him how I felt and that his choice may not be in his best interest. I don’t think it’s essential to mention what he did as much as my reaction to…

I’m looking forward to attending the Hemophilia Federation of America’s annual symposium, running today through Saturday. I’ll be among the community I consider family. But it’s been a few years since I attended a large conference. I’m excited about reconnecting with old friends, but I’m also a bit…

Osteoporosis and other bone disorders are more common in hemophilia carriers than in the general population, according to an analysis of U.S. insurance data. Its researchers also found a higher rate of bone problems among people with von Willebrand disease (VWD), another inherited bleeding disorder. “This study highlights the need…