CSL Behring, a global biotherapeutics company focused on the development and delivery of innovative therapies that are used to treat coagulation disorders, announced this week that the European Commission has approved Idelvion (albutrepenonacog alfa), its long-acting albumin fusion protein for the treatment of bleeding in patients with hemophilia B…

December not only marks the end of the year, but it’s also the time for my annual visit to the specialists at my regional hemophilia treatment center (HTC). I live more than two hours away from them, so I appreciate the convenience of telehealth appointments, which are far more…

The first participant has been dosed in a Phase 1/2 clinical trial evaluating marzeptacog alfa activated (MarzAA) to treat bleeding episodes in patients with factor VII (FVII) deficiency, Glanzmann thrombasthenia, and hemophilia A with inhibitors receiving treatment with…

I was over the moon when my first son, Julian, was born in 1996. My baby was here, and life would never be the same. When Julian wouldn’t stop bleeding after his circumcision, the pediatrician was visibly shaken. Seeing a doctor with furrowed eyebrows is disconcerting. The next day,…

I’ve been cleaning up my computer files and finding pictures everywhere except where they are supposed to be stored. One photograph caught me by surprise. My mighty warrior, Caeleb, went to a monster truck rally in 2014. He took a great picture with the driver of the monster…

The piercing bug has bitten me again! After watching TikTok videos of teens and young adults with unconventional piercings, I decided to get a few more myself: a nose (septum) piercing, a center labret piercing, and a couple more ear piercings. My inner child is elated! My…

My nephew does not like needles. Actually, “hate” is probably a better word. He hates needles. This is not ideal, given that he has hemophilia. Recently, I was helping him practice IV infusions on a makeshift “arm” I created. As we talked, I told him, “You need to own hemophilia.

After I had spent a few days lobbying legislators in Washington, D.C., my youngest son, Caeleb, joined me for some much-needed time together. I met him at the airport to start our madcap adventures. He was in a wheelchair due to chronic pain from numerous spontaneous bleeding…

Most people with hemophilia have a positive attitude toward gene therapy, and are willing or “very willing” to receive this treatment, according to a small interview study assessing patient perceptions. These patients reported that they choose their treatments based mainly on five criteria. Specifically, those are…

One-time treatment with the investigational gene therapy SPK-8011 led to sustained low bleed rates for people with hemophilia A in a Phase 1/2 clinical trial. That’s according to data of up to 5 years of follow-up presented by the therapy’s developer, Spark Therapeutics, at the annual meeting of…