The National Hemophilia Foundation (NHF), through its Nursing Working Group (NWG), has released new guidelines to help hemophilia A patients self-administer Hemlibra (emicizumab). In its announcement, the foundation also highlighted the issuance of new guidelines for nurses to ensure safe and effective administration of standard into-the-vein…
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myPKFiT for Advate, a free web-based software designed to personalize and assess preventive dosing regimens for some hemophilia A patients treated with Advate, is now available in the U.S. MyPKFiT for Advate is the first and only pharmacokinetic (PK) dosing software approved by the U.S. Food and Drug Administration (FDA)…
Editor’s note: After this column was written, Jared and his wife welcomed a healthy baby girl, Melanie Citrine, on Jan. 18. Congratulations! My wife is 38 weeks pregnant. I’ll soon be a father. That fact is becoming more real to me every day. I have many questions: Will I be…
This Father’s Day, as we celebrate the role of fathers in our lives, I can think of no one more deserving of recognition in our bleeding disorders community than Iván Girón. At Genentech’s Rare Blood Disease Summit in San Francisco last year, I was immediately drawn to Iván…
SerpinPC, an experimental treatment being developed by Centessa Therapeutics, continues to be safe when used for up to nearly three years and to almost zero out the number of bleeds in adults with severe hemophilia A or B. Those findings come from a one-year extension of the…
It’s quite difficult to focus on any sense of positivity when bleeds become more frequent. After a bleed-free streak that lasted over six months, it was easy to be disappointed when hemophilia made me feel vulnerable and weak again. It’s not all that bad, though. At times, being bedridden results…
Hemophilia A patients with factor VIII (FVIII) inhibitors show deficiencies in regulatory B- and T-cells — immune cells that typically dampen immune and inflammatory responses — but their levels can be restored with successful immune tolerance induction (ITI), a study shows. These findings shed light on how ITI — given…
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How a Service Dog Improved This Hemophiliac’s Life
Bob Byrne from Northern California has severe hemophilia A. As a result of bad bleeds when he was younger, Byrne now suffers from arthritis and finds getting around difficult. Without anyone who can offer him care on a daily basis, he decided to get a service dog. MORE: Ten benefits of having…
Data from non-human primates suggest gene-editing therapy MGX-001 may be able to restore clinically meaningful levels of factor VIII (FVIII) after a single dose, supporting its potential as a one-time treatment for hemophilia A. Developer Metagenomi expects to meet with health authorities later this year to develop a strategy for…
Planning for what happens after I die is such an uncomfortable topic that I want to run and hide. Somehow, just thinking about death makes it feel more real, even though I should have years of life left. Yet, I know that hemophilia A makes my life more fragile.