A new online service allows patients with bleeding disorders like hemophilia to share important information about their treatment and bleeds with their healthcare team in real time. MORE: Five tips for living healthily with hemophilia The HemaGo XChange portal was created by Novo Nordisk A/S as an update to their existing website…
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Hemophilia is a rare, inherited bleeding disorder caused by a lack of specific clotting factors, leading to excessive and potentially life-threatening bleeding. There are three types: A, B, and C, with A and B being X-linked and primarily affecting males. New treatments like marstacimab are being developed, and online services allow patients to share treatment information with their healthcare teams.
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Hemophilia, a disorder characterized by excessive bleeding, is caused by the lack of activity of certain clotting factors, which are proteins that are needed to form blood clots.
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13 Fast Facts About Hemophilia
Hemophilia is a rare inherited disease where a person is lacking a certain type of clotting factor. This means that their blood is unable to clot so injuries will result in extensive bleeding. If left untreated, this bleeding can become life-threatening. Here are a few fast facts about this rare…
The once-weekly injection therapy marstacimab is being considered for approval in both the U.S. and Europe for people with hemophilia A and hemophilia B who don’t have inhibitors. The U.S. Food and Drug Administration (FDA) is expected to decide on it in late 2024, while a decision from the European…
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What About Hemophilia?
Mr. Man started coughing on Friday and grew much worse by Saturday. My boy struggled with flu-like symptoms all weekend. We thought that by giving him allergy meds and cough suppressants, he would recover and be well for school on Monday. No such luck. The medicines wouldn’t work,…
Results from two Phase 3 trials support the use of emicizumab for the preventive treatment of hemophilia A in children, adolescents, and adults, Genentech announced. These results will be presented at the 26th International Society on Thrombosis and Haemostasis (ISTH) Meeting July 8-13 in Berlin, Germany. Emicizumab is an…
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What Does Hemophilia Look Like?
What does an illness look like? Sometimes a bald head, pale skin, or a mobility device are outward signs that someone has an illness. People would never know my sons have hemophilia by looking at them today. My oldest son, Julian, is 24. He lives on his own,…
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13 Tips for Managing Your Child’s Hemophilia
Life with hemophilia can be challenging but there are ways that you can manage the disease to ensure your child leads as normal a life as possible. To help you navigate your child’s illness and help prevent bleeds, we’ve put together a list of tips. MORE: How to prepare for your child’s…
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13 Tips for Managing Your Child’s Hemophilia
Life with hemophilia can be challenging but there are ways that you can manage the disease to ensure your child leads as normal a life as possible. To help you navigate your child’s illness and help prevent bleeds, we’ve put together a list of tips. MORE: How to prepare for your child’s…
The other day, I picked up “MacDonald the Younger” from hemophilia camp. I enjoyed the trip through the mountains. The air felt fresh as I grew anxious to see my son. I wanted to hear all about his camp experience. What friends did he see? Did he try the…