Aging can affect mobility and lead to a series of complications for people with hemophilia, including increasing the risk of joint bleeds and irreversible joint damage. Regular exercise and physical therapy can be an important part of maintaining your strength, protecting your joints, and managing hemophilia’s impact on…
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People with moderate-to-severe hemophilia and ankle joint disease reported significant impairments in life quality and foot and ankle function, according to a recent U.K. study. Chronic pain emerged as a significant predictor of these patient-reported outcomes, as did the presence of inhibitors — neutralizing antibodies that can lower the…
The latest results of CSL Behring’s recombinant coagulation factor IX (FIX) Idelvion, also known by its generic name CSL654, demonstrated long-lasting therapeutic potential for both pediatric and adult patients with hemophilia B. The findings were detailed in poster presentations at the 26th Biennial…
Recently, I attended the Florida Bleeding Disorders Association’s Women’s Educational Retreat in Hollywood, Florida. I came away with several important takeaways, but one presentation by Lucila Ramirez Donaldson of Genentech truly resonated: caregiver burnout. Many of the women attending were mothers or partners of people living with hemophilia. I’ve…
The Medicines and Healthcare Products Regulatory Agency (MHRA) for the U.K. has approved the resumption of patient enrollment in BioMarin Pharmaceuticals’ Phase 1/2 clinical trial evaluating the investigational gene therapy BMN 270 as a treatment for severe hemophilia A. BioMarin suspended patient dosing in the trial in June because of increasing levels…
Have you ever been to a holiday dinner with two tables? One table is designated for “the adults” and the other is for “the kids.” Growing up, this was the case at many family gatherings. I felt offended when I, as a teenager in high school, was stuck…
In my five-plus years of writing columns for Hemophilia News Today, I’ve missed two weeks. Many times, I feel that I’m repeating myself as I struggle to write something that matters to the bleeding disorders community. I share daily experiences as I navigate bad and good moments with…
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How to Deal With the Financial Cost of Hemophilia
Dealing with a bleeding disorder can weigh heavy on your wallet. To help you manage the financial cost, we’re sharing a few tips we’ve learned from the Hemophilia Federation of America. MORE: Economic costs of hemophilia, large and lifelong, detailed in report Consider your costs Bleeding…
Catalyst Biosciences will present three posters with data from its two investigational candidates for hemophilia at the upcoming 10th Annual Congress of the European Association of Haemophilia and Allied Disorders (EAHAD) Feb. 1-3 in Paris, France. The first poster presentation is for a next-generation factor VIIa, marzeptacog alfa (activated), that showed…