Having a COVID-19 infection had no significant impact on bleeding episodes, nor on the levels of factor replacement therapy used in treatment, for people with hemophilia, a new study from China found. The study did reveal, however, that, compared with adults, children with hemophilia had a significantly lower…
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Hemophilia treatments in Thailand are limited due to a lack of budgetary resources, the high cost of medications, and an infrastructure inadequate for supporting patient care, a study found. These hurdles mean that people with hemophilia in the Southeast Asian country may not be able to access the care…
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…
For many millennial families, the dining table has become somewhat of a relic. What was once a central feature of family life — where meals were shared, stories told, and connections made — is now increasingly overlooked. It’s a trend I’ve seen in many homes, including my own,…
I hate it when the term “hero” is used to describe me and my daily life with hemophilia. Honestly, I despise it being used to describe anyone living with a rare disease or disability. I think it’s the wrong word, as its use can inadvertently minimize the emotional challenges…
Two new mutations affecting the production of functional clotting factor VIII were identified in a group of Vietnamese patients with hemophilia A, researchers report. Their findings were described in a letter to the editor, “Mutation characteristic of 103 haemophilia A patients in Vietnam: Identification of novel mutations,”…
A person in Germany with severe hemophilia A has been treated with Roctavian (valoctocogene roxaparvovec-rvox), the first time the gene therapy has been used commercially in Europe, according to BioMarin Pharmaceutical, its developer. “Today represents an important milestone for the hemophilia community and for patients and…
Researchers have developed a biodegradable capsule to deliver a protein missing in patients with hemophilia B, according to a new study published in the International Journal of Pharmaceutics. If it proves to be successful, this capsule may provide a cheaper and less painful option to injections or infusions. The…
Cazandra Campos-MacDonald, whose son lives with hemophilia, shares her experiences with hemophilia treatment centers and offers advice on how to find the right center to suit your needs.