A single dose of Freeline Therapeutics’ experimental gene therapy FLT180a increased the levels of factor IX (FIX) — the missing clotting protein in hemophilia B — for up to around 3.5 years in nine out of 10 men with moderate-to-severe disease. That’s according to data from the Phase…

We know dealing with hemophilia sometimes feels like an uphill battle, both for the patients and the caregivers. You feel like you’re not doing enough or as if the disease is taking up all your time and attention. To help you on your journey, we’ve gathered a few quotes we thought…

Provisions of a new law that went into effect on Oct. 1 allow families affected by hemophilia and other bleeding disorders who are under Medicare to better access skilled nursing facilities (SNFs), the National Hemophilia Foundation (NHF) announced. This law, known as the Hemophilia SNF Access Act, should…

A “6 Years Ago Today” moment popped up in my Facebook feed recently. The notification took me back to another Thanksgiving when my son, Caeleb, was 7, and we were in the hospital. He had port access issues, his factor levels were all over the place, and a knee bleed…

Children with hemophilia in areas with limited medical resources face a high risk of fatal brain bleeds, a danger that is dramatically worsened by delays in seeking emergency care. A new study from Thailand reveals that without access to modern preventive therapies, more than a third of pediatric patients…

When you have a bleeding disorder, you are part of a community that becomes family. You never completely leave them, and they never leave you. The disorder binds you for a lifetime. When your bleeding disorder wreaks havoc, you tend to reach out to your bleeding disorder family…

Scientists successfully combined the gene-editing tool CRISPR-Cas9 and a special type of virus to deliver corrected genes to restore the function of the coagulation factor IX (FIX) gene in young mice with hemophilia B. The study, “Long-term correction of hemophilia B using adenoviral delivery of CRISPR/Cas9,”…

Almost 27 years ago, I received the title of caregiver when my first son, Julian, was born. Not realizing that my role in his life would change over the years with his hemophilia, I gladly performed my duty and helped him navigate the waters of medical care. Ten…

Living with hemophilia and epilepsy has shaped much of my husband’s life — but fatherhood transformed it. Before our daughter was born, Jared, my husband, already carried the weight of two chronic conditions. He’d long made peace with a life of calculated risks, limited physical activity, and the unpredictability…

Part three in a series. Read parts one and two.  With the invention of the map created by my son’s medical team, my wife, and me, the most challenging year that we ever experienced ended. My son did not have another absence while in elementary school due…