My eldest son, Julian, is 22. He is studying music at college. It’s his passion, and as I have a music education degree and my husband has a music degree, his course choice did not come as a surprise. With our recent move, Julian changed schools, and his…
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There’s something humbling about watching someone relearn how to walk. Not as a toddler, and not for the first time, but as an adult who already knows what walking used to feel like. My husband, Jared, has severe hemophilia B, and for years, his right ankle has been what’s…
Key findings from clinical trials of three recombinant coagulation factors as new hemophilia treatments, presented at last year’s Congress of the International Society on Thrombosis and Haemostasis (ISTH 2015), have been published in a supplemental issue of the journal Thrombosis Research. The results were presented in a session…
I am not merely a carrier of hemophilia. I am certainly not an asymptomatic carrier of hemophilia. I am not even a symptomatic carrier of hemophilia. I am a woman…
Structural joint damage and significant pain are evident in the ankles of people with hemophilia, but the two were not found to be related to one another in a recent study. Researchers suspect that ankle pain may originate in the somatosensory nervous system, which relays nerve signals from the…
BeneFIX (nonacog alfa) is a recombinant, or man-made, clotting factor therapy approved to prevent and treat bleeding episodes, including those occurring during surgery, in adults and children with hemophilia B.
On Sunday mornings in my home, I usually watch “CBS Sunday Morning,” hosted by Jane Pauley. Last week, an interview caught my eye. The segment featured Dr. Jennifer Doudna, who won the Nobel Prize in chemistry in 2020 along with fellow researcher Emmanuelle Charpentier for developing…
Rebinyn (nonacog beta pegol, or N9-GP) is an extended half-life product approved for treating and preventing bleeds, including those occurring during surgery, in adults and children with hemophilia B.
Note: This story was updated March 28, 2024, to clarify the gene therapy delivers the mRNA of the Cas9 enzyme. Intellia Therapeutics is ending its collaborative agreement with Regeneron, which had the two companies working together in developing hemophilia B gene-editing therapies, according to a securities and exchange…
Next year’s Hemophilia Federation of America’s (HFA) monthly educational series for patients, caregivers, and healthcare providers opens on Jan. 18 at 7 p.m. EST with a presentation about joint replacements for bleeding disorder patients. The speaker for the first of the 12 HFA webinars planned for 2022 is James…