I am a patient. I am an expert on my own health experiences. I am an educator. I am an advocate. Hemophilia is a rare disease. Being a woman with a disorder thought once to be male-only makes it complicated to navigate. I…
ASC Therapeutics has gotten exclusive rights to Expression Therapeutics‘ technology to develop liver-targeting hemophilia A gene therapies. “We have a common mission with Expression Therapeutics — to develop novel therapies that will dramatically improve the lives of persons with hemophilia around the world. Hemophilia A is a…
Our family took a recent trip to White Sands, New Mexico. The dunes were amazing. I had thought that my feet would burn due to the heat. However, I was pleasantly surprised to realize that the sand was cold. I enjoyed walking barefoot as we climbed to the top of…
Summer is upon us. Our kids have big plans: sleeping in, watching television, playing video games, sleepovers, vacations, and summer camp. From church camp to athletic and band camp, the summer is filled with opportunities. The bleeding disorder community also has summer camps across the country from June to…
Hemophilia is a blood disorder in which patients do not make enough of the clotting factors that control bleeding. Following accident or injury, people with hemophilia may be unable to stop bleeding. In severe cases, patients may bleed spontaneously at joints. While there is no cure for hemophilia, there…
Replacement therapy is one of the standard therapies used to treat hemophilia, a genetic disorder caused by the absence or defects in blood clotting factors. Hemophilia makes patients highly susceptible to bleeding due to a compromised cascade of clotting reactions that are necessary to “seal” injuries.
Von Willebrand disease (VWD) is an inherited bleeding disorder with an estimated prevalence between 23 and 110 per 1 million people. These numbers vary because the criteria for diagnosis are not always the same. Causes of VWD VWD is caused by mutations in the VWF gene. This gene…
As I write this, Mother’s Day is approaching, and tributes to mothers have begun filling the pages of local blogs and publications. They speak of the heroism of moms around the world. The sacrifices that moms make for their children. Everything they do to make their families’ lives a tiny…
I once spent an entire summer reading Emily Dickinson’s work and analyzing it, from the literal meaning of her words to the historical context of her work and the constraints under which she wrote each line. At the end of that summer, I was positive about one thing when…
A name is not mere letters on paper or a screen, but a way to proclaim our existence. What we call ourselves lets the world know who we are. My name, Joe Keith, comes from my great-uncle (my grandfather’s brother). I take a great deal of pride in carrying on…
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