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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Emicizumab shows promise as a preventive treatment for hemophilia A across all ages. Research efforts are supported by the world's largest genetic hemophilia repository, My Life, Our Future (MLOF), which provides genetic and phenotypic data to researchers. Shared data is crucial for understanding trends and improving treatment. Additionally, women with hemophilia are being educated and empowered to advocate for their care, and children with hemophilia can safely participate in non-contact sports.
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Inspired to sponsor a national conference for women with hemophilia types A and B, The Hemophilia Foundation of Michigan (HFM) became a game changer last November when it hosted an event called “Being Visible.” Gathering 103 women representing 32 states, the event featured physicians…
My Life, Our Future (MLOF), a national program founded by leaders in the hemophilia and blood disorder community, marked Feb. 28 — Rare Disease Day — by launching the world’s largest research repository of its kind to researchers and scholars. The program is opening to U.S. scientists and will expand to worldwide scientists in 2018.
https://www.youtube.com/watch?v=qKRqJWVQRio This video from the Centers for Disease Control and Prevention takes a look at hemophilia and explains what the blood disorder means for those who suffer from it. MORE: Three tips for coping with a hemophilia diagnosis Hemophilia patients and caregivers share how hemophilia affects their everyday lives…
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How Kids Can Play Safely With Hemophilia
In this video from the Centers for Disease Control and Prevention, learn how children with hemophilia can play and live safely. The simple animation features four boys who all have hemophilia but love to play sports. MORE: How hemophilia is inherited The film advises that…
Complication rates for elective surgeries in people with inherited bleeding disorders like hemophilia are low in Australia, reflecting good safety in their performance despite guidelines not always being followed, a study reported. Use of a specialty hemophilia treatment center (HTC) for surgery, and use of factor replacement therapy were among guidelines sometimes…
Jivi (damoctocog alfa pegol) is an approved lab-made replacement therapy designed to prevent or treat bleeding episodes in previously treated children and adults with hemophilia A. It is administered via into-the-vein (intravenous) infusions.
The U.S. Food and Drug Administration (FDA) has granted orphan drug status to Sigilon Therapeutics’ candidate cell therapy, called SIG-001, for hemophilia A. Orphan drug status aims to encourage therapies for rare and serious diseases, through benefits such as seven years of market exclusivity and exemption from FDA application…
Pfizer said it will stop development and commercialization of hemophilia B treatment Beqvez (fidanacogene elaparvovec-dzkt). “Pfizer has made the decision to cease further development and commercialization activities with respect to Beqvez for several reasons, including the limited interest patients and their doctors have demonstrated in hemophilia gene therapies…
In this video shared by Colleen, learn about a mobile app from Pfizer which helps hemophilia patients track bleeds, infusions and factor supply. It also allows those living with the disease to track their daily physical activities, steps and heart rate to help…