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…

My husband, Jared, and I are navigating another significant life transition. Our daughter, Cittie, is now on her second week of kindergarten, which marks the official start of formal schooling here in the Philippines. This transition is even more pronounced because we’ve moved her from a traditional school to a…

Preventive treatment with a low dose of factor replacement therapy in children with hemophilia A led to sufficient levels of the clotting factor in most patients, but the time in which it did so varied, a recent study reported. Researchers noted that while findings support the use of this…

I used to be great about determining if my now 14-year-old son Caeleb was having a bleed. Identifying the symptoms of a joint bleed was second nature to me. Swelling of the joint, warmth to the touch, redness in the area, and pain are a few of the telltale signs…

A delivery method using nanotubes with a spear-like shape may open new avenues for safer, faster, and more cost-effective gene therapies for several genetic diseases, including hemophilia, according to a study. The study, “Precision-Guided Nanospears for Targeted and High-Throughput Intracellular Gene Delivery,” was recently published in the…

My family was involved in a car accident. An afternoon to the movies turned into phone calls to the police, 911, and the insurance company. Left behind by a reckless driver, I am grateful that two witnesses came forward. Having never been in an accident, I hope this is my…

As a pastor, I always remind my parishioners that it’s not enough to profess one’s faith. A person must live out the tenets of what they believe. In other words, talk is cheap. It doesn’t do a person any good to shout their love for God on Sunday and act…

Adults and adolescents with hemophilia A or hemophilia B without inhibitors experienced significantly fewer bleeding episodes when using concizumab as a prophylactic (preventive) treatment compared with those who weren’t on any prophylaxis. That’s according to data from explorer8 (NCT04082429), an ongoing Phase 3 clinical study in which…

Exhaustion, stress, loneliness, and boredom are a few symptoms of living in our current world. Some people easily adapt to new ways of moving in the world, and others have a more difficult time. What is amazing is how the rare disease/disorder community seems to move forward without skipping a…