Life when you’re married to someone with severe hemophilia B often feels unpredictable. One moment, everything seems fine, and the next, a spontaneous bleed or unexpected health concern throws everything into chaos. Over the years, I’ve learned to stay on high alert, always ready to shift gears at a…
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Language barriers can make hemophilia conversations feel confusing, rushed, or isolating — but clear communication is essential for safe, confident care. Understanding your rights, asking for support, and advocating for your needs can help ensure your voice is heard.
When my oldest son was diagnosed with severe hemophilia at birth, I found myself catapulted into a world I never knew existed. I became part of the bleeding disorder community, like it or not. I slowly began to realize that this community was filled with passionate, well-educated people who knew…
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…
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Sangamo Gets OK to Enroll UK Patients in Phase 1/2 Trial on SB-FIX, Potential Hemophilia B Therapy
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…
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…
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Expert Advice on Aging With Hemophilia Â
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…
Growing up in suburban Milwaukee, I saw the world through a self-employed lens. My grandfather sold and repaired typewriters, a business he started in downtown Chicago in 1951, a time that must have been most colorful. My family settled in Milwaukee, where my father became the largest independent distributor of…
The first patient has been dosed in China in a registrational clinical trial of BBM-H803, a one-time investigational gene therapy that Belief BioMed is developing to prevent bleeding in hemophilia A. The Phase 1/2/3 clinical trial (CTR20233400) is testing how safe and well tolerated BBM-H803 is as a…
Funding has been set for the RESET-HA Phase 3 clinical trial evaluating Tremeau Pharmaceuticals‘ TRM-201 (rofecoxib) in people with hemophilic arthropathy — a painful and degenerative disease caused by recurrent bleeding in the joints. The private investment firm Gurnet Point Capital also will support other aspects of TRM-201‘s…