As a chaplain, I am privileged to stand at the bedside of someone who is dying. Often, few words are exchanged. I know it is my presence there that matters most. When people learn that I work in hospice, they often say, “Oh, my goodness, that must be hard work.

Have you ever felt as though God or the universe was reaching out to offer you comfort? Whether you pray to Jesus, Allah, Adonai, or honor the gifts of Mother Earth, being in tune with your spiritual self can be a profound source of solace during the challenges of living…

A single infusion of Hemgenix (etranacogene dezaparvovec-drlb) helped boost levels of factor IX (FIX), the clotting protein missing in hemophilia B, in many patients who already had antibodies against the viral carrier, according to new trial data. The findings suggest the gene therapy may benefit a broader group of…

I’ve written before about not seeing myself as a caregiver in the traditional sense. For us caregivers, hemophilia doesn’t usually demand round-the-clock care. My husband, Jared, manages his condition independently. He infuses. He monitors his body. He makes decisions about risk and rest. My role on most days is…