Organizations championing patients with hemophilia and other bleeding disorders have formed a united front to oppose the Better Care Reconciliation Act, the Obamacare replacement legislation that the groups contend will damage the hemophilia community. The National Hemophilia Foundation, Hemophilia Federation of America, Coalition for Hemophilia B and…

Several years ago, when I was checking some incisions about a week after I had a surgical procedure, I discovered gobs of red, gelatinous goo. No scabs had formed over the incisions like they were supposed to. I have hemophilia, so thankfully, I made it through the surgery safely,…

There’s one thing I want more than anything: When my sons are grown with their own families, I want them to come home for Thanksgiving (without my having to beg). I dream of sitting around the table with my sons, their significant others, and hopefully their children. I want…

A 39-year-old man from Arizona became the first patient in Nevada to receive Hemgenix (etranacogene dezaparvovec), the first gene therapy to be approved for hemophilia B. The infusion was administered at the Cure 4 The Kids Foundation, under the supervision of Aimee Foord, director of the foundation’s bleeding…

A Phase 1/2 clinical trial on SB-FIX, an investigative gene-editing therapy for hemophilia B, is now authorized to enroll adult and adolescent patients in the U.K., Sangamo Therapeutics announced. Approval from the U.K.’s Medicines and Healthcare Products Regulatory Agency (MHRA) will make this the first genome-editing study conducted in Europe. Once safety…

I will never forget the night I was ordained as an elder in full connection in the United Methodist Church. We were about three and a half hours away from home at a church in the small town of Clovis, New Mexico. My ordination took place at the close…

Special care is needed to manage pregnancy and childbirth for women who have or are carriers of hemophilia, yet many hemophilia treatment centers in Italy don’t have a specific protocol in place for this type of management. Indeed, fewer than 1 in 5 centers in the European nation were…

As you age, it’s likely you’ll find yourself facing several health concerns, some which are even more probable if you have hemophilia. Some of these are quite difficult to prevent, but with a little extra care, you can reduce your risk. Here are some tips from Living With Hemophilia to help you look after yourself (and stay as healthy…

Hemophilia is an inherited disease that prevents blood from clotting, a process that’s required to stop bleeding. According to the Hemophilia Federation of America, there are various complications that can arise from having a bleeding disorder like hemophilia. MORE: 4 Hemophilia Screening Tests Joint damage: One of the most frequent complications…