The Hemophilia Federation of America (HFA) is seeking a variety of historical artifacts and records to add to its archival project in honor of its upcoming 25th year of helping the bleeding disorders community. The nonprofit is collecting vintage medical equipment, supplies, rally posters, newsletters, documents, personal journals, diaries, and…
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The Hemophilia Federation of America (HFA) is collecting historical artifacts to mark its 25th year of service to the bleeding disorders community. Hemophilia, a bleeding disorder, primarily affects males for types A and B, while type C affects both sexes. Caregivers of children with hemophilia manage symptoms, treatments, and educate others, which can cause stress. New treatments, like Catalyst Biosciences' CB 813d, aim for faster, longer-acting solutions for hemophilia A and B patients. It's important to empower individuals with hemophilia and avoid defining them solely by their diagnosis.
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When parenting a child with hemophilia, it’s important to understand how you can support them as they learn to live with the bleeding disorder. The two most common types of hemophilia, type A and type B, primarily affect males, while hemophilia C affects both…
My oldest son, Julian, was 10 years old, when we first saw the musical “Wicked” onstage. Our family’s love for live theater is a bond we cherish. As we watched and listened, I heard a lyric that made me shudder: “Unlimited. My future…
Catalyst Biosciences, developers of protease therapeutics for serious hemostasis and anti-complement conditions, and CMC ICOS Biologics, Inc., which manufactures therapeutic proteins, have partnered for the manufacture of a next generation hemophelia drug. Catalyst is developing CB 813d, a longer-acting Factor VIIa drug for hemophilia A and B inhibitor patients. “We selected CMC Biologics…
Parenting a child with hemophilia often means learning how to balance protection with independence — knowing you can’t prevent every bleed, but still wanting them to grow, explore, and feel like themselves.
Healthcare costs can be 25 times higher for hemophilia B patients than for individuals who do not have a bleeding disorder, according to a recent study. These findings reflect both direct costs of hemophilia treatment and a greater need for other healthcare resources, researchers noted. The study, “…
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Students Chosen for “Hemophilia: The Musical” Production Announced by BioMarin and Believe Limited
BioMarin Pharmaceutical Inc. and Believe Limited have announced the students chosen to participate in the theatrical production of “Hemophilia: The Musical,” a program that aims to empower the bleeding community through performance while raising public awareness of the connection between arts and wellness. The 25 high school students hail from…
I am not neurotypical. My thoughts, perception, and speech can be different than others. It is subtle, but there. For example, if someone tells me something, I take their word literally — and I mean literally. If someone tells me they poked themselves 30…
Instead of Powerball, I have won the rare bleeding disorder lottery. I have von Willebrand disease and hemophilia B, a less common form of hemophilia that arises when a blood-clotting protein called factor IX is missing or deficient. My diagnoses are rare within a rare community. I often feel like a…