I really hate asking for help. I have several theories why, but mostly, it boils down to a fear of inconveniencing others. Perhaps there are deeper causes, like needing to learn that I am worthy of accepting it and understanding that everyone deserves to have their needs met, both physically…

“Stop the Bleeding!” is an online fictional mockumentary series which follows a hapless and dysfunctional organization that aims to raise money and awareness of bleeding disorders such as hemophilia. MORE: How you can make an impact today In this episode shared by BloodFeed, the team…

When people find out that my husband, Jared, has hemophilia and epilepsy, they often say things like, “You’re so strong,” or, “You’re such an inspiration.” He usually smiles politely, then tells me later, “I’m not special. This is just my normal.” That line…

I often find myself thinking back to the advice my parents gave me over the years. Of course, I considered it “nagging” rather than advice at the time, but the older I get, the more I realize my parents were two of the smartest people I’ve ever known.

The European Medicines Agency (EMA) has agreed to review a request by CSL Behring to approve the potential gene therapy EtranaDez (etranacogene dezaparvovec) for people with hemophilia B. The request, in the form of a marketing authorization application or MAA, will be reviewed under the EMA’s accelerated assessment, meaning…

I will never forget the first time we visited my wife’s OB-GYN following the birth of “MacDonald the Older.” It was 1996, and the world of hemophilia looked much different than it does now. Synthetic products were making their way into the market. Nightmares regarding the “hemophilia…

Two potential gene therapies — AMT-060 and AMT-061 (etranacogene dezaparvovec) — lead to safe and long-term increases in factor IX (FIX) activity, as well as fewer bleeds among patients with hemophilia B, according to the therapies’ maker, uniQure. The company announced in a press release that…

I held my son, my firstborn, in my arms. From outward appearances, no one could guess that he had a bleeding disorder. Some moments, I forgot about his diagnosis. Life seemed to be moving at a healthy pace, and my wife and I invited the newest member of the…

Gentle exercise has many health benefits, particularly for anyone suffering from a chronic illness. In this video, personal trainer Ryan Krane demonstrates some simple exercises that can help counter the effects of chronic fatigue. MORE: Although there’s no cure for hemophilia, there are ways that to manage the disease…

A partnership between Emmes and MedGenome seeks to accelerate development of genomics-powered therapies for people with rare diseases, such as hemophilia. The companies plan to combine patient data into custom disease registries to improve research design and help with patient recruitment for clinical trials. In addition, they…