Treatment with CB 2679d increased factor IX activity levels in the blood, bringing them closer to normal levels in the newest group of patients with severe hemophilia B in the Phase 1/2 FIX clinical trial, Catalyst Biosciences announced in a press release. Catalyst, the therapy’s maker, believes that the next-generation factor…
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Express Scripts has teamed up with PinnacleCare to include in its new Rare Conditions Care Value (RCCV) program a service that provides patients with rare diseases like hemophilia a second opinion from a specialist care provider. The initiative, simply called Second Opinion, is designed to give patients an additional…
My son gets off the bus. I look at his face, hoping to see an indication of how his first camp experience went. Did he have a good time? What kind of life lessons did he learn being away from home for a whole week? I looked for answers…
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Can Hemophilia Be a Disability?
Social media. You either love it or hate it. I must confess that I am guilty of wasting time on Facebook and Twitter, but I have used these outlets as a means of support on more than a few occasions. In the bleeding disorder community, several Facebook groups…
Preliminary results from the U.S. part of Bayer’s global HemACTIVE patient survey show that a majority of hemophilia patients want to be more active but are limited in their capacity to perform outdoor activities. The data was shared by Bayer at the World Federation of Hemophilia 2018…
US Bioservices, a specialty pharmacy, announced that it is working with the pharmacy benefit management company MedImpact to dispense prescriptions and select services through the MedImpact Direct Specialty Program for the hemophilia community. Under the collaboration, US Bioservices will offer hemophilia patients who are MedImpact members the opportunity to…
A gene therapy approach acquired by uniQure was recently covered in two new patents, one issued in the United States and one in Canada, broadly covering ways of treating bleeding disorders that include hemophilia B, the company announced in a press release. The therapy has a nucleic acid encoding the…
New swimming trunks, sunscreen, cap, sleeping bag — gathering these items means it’s time for hemophilia camp! My son Caeleb is so excited that he is driving his dad and me a little crazy. Two years ago, he broke his wrist the night before camp and wasn’t…
When I was younger, my parents would tell me to date a particular “ideal” man. This man need not be good looking, but he’d better be a good guy — no questionable values, capable of getting along with my family — the perfect guy in the eyes of every Filipino…
The U.S. Food and Drug Administration has approved a larger vial size — 3,500 IU — of CSL Behring’s Idelvion (albutrepenonacog alfa) for the treatment of hemophilia B patients. Idelvion is supplied as a powder for intravenous use and must be reconstituted, or mixed with a liquid (called…