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I entered my 3-month-old son’s room and stared at him as he peacefully slept in his cradle. Streetlights shined through the window into the darkened room. I glanced out at a serene view that reminded me that everyone uses nighttime to rest. I turned to my baby boy, unsure of…

Note: This story was updated Jan. 8, 2021, to clarify that the second set of experiments in mice and non-human primates used a research construct, not the gene therapy. Generation Bio has announced new data showing that its investigational non-viral gene therapy platform can increase levels of the clotting…

Jennifer Lynne shares her journey with von Willebrand disease and hemophilia B, reflecting on the misconceptions women face, the power of patient documentation, and the importance of community support. She highlights how advocacy has shaped her life and why sharing stories can drive change in Hemophilia and Me.

Ruptured spleens are rare in newborns, usually occurring secondary to an underlying coagulation disorder, such as hemophilia, or a splenic abnormality. Here, researchers report the first case of a newborn with a spontaneous splenic rupture and severe hemophilia A who was successfully treated without surgical intervention. The case study, “…

My nephew does not like needles. Actually, “hate” is probably a better word. He hates needles. This is not ideal, given that he has hemophilia. Recently, I was helping him practice IV infusions on a makeshift “arm” I created. As we talked, I told him, “You need to own hemophilia.

When I look back on the things my husband, Jared, and I did in our 20s, I sometimes wonder how we managed to get through them without more emotional or physical scars. We were young, impulsive, and convinced that nothing too serious could happen as long as we “managed things…

As I mentioned in an earlier column, the news that my firstborn son had hemophilia caught my wife and me entirely off guard. When we spoke with the obstetrician, the only word we heard was hemophilia. We later learned that my son had another diagnosis: a low inhibitor titer. The…