What does your pain feel like? Is it burning, sharp, pulling, shooting, or achy? Describing pain is difficult. In fact, many words used to describe pain are metaphors or similes: It’s like being stabbed by a knife or burned by a hot stove, for example. Yet a lot of people…

The U.S. Food and Drug Administration (FDA) is considering updating the prescribing information for Altuviiio (efanesoctocog alfa) to include final data on a clinical trial that tested the now-approved therapy in children with hemophilia A. Sanofi, which markets Altuviiio in the U.S., submitted a supplemental biologics license…

Welcome to my world, where it seems like I’m perpetually hosting a pity party. The past year has thrown more curveballs my way than I’d ever anticipated, leaving me caught in a never-ending hurricane of challenges. While I’m sharing my struggles here, I’m also keeping in mind the resilience of…

To help advance new treatments for hemophilia and other blood disorders, Pathway to Cures (P2C) has invested $250,000 in Anvesana, a company working to develop therapies based on RNA biology. “Anvesana is delighted to be working with Pathway to Cures to develop therapeutics that will bring life altering…

After writing a weekly column for over six years, I needed the break I’ve just completed. I’ve spent the past few months working to renew my spirit and consider what’s essential. I didn’t realize how desperately I needed to let go of some things. While my recent sabbatical is technically…

On Tuesday morning of last week, as I sat at my desk sifting through emails and attempting to plan my afternoon, my phone rang. I saw it was Julian, my oldest son, so I picked up the phone and steadied myself for our usual late-morning chat. I said hello in…

Switching from on-demand treatment to regular preventive therapy with extended half-life products may mean fewer bleeds, healthier joints, and better quality of life for people with hemophilia. That’s according to a new analysis of Phase 3 study data from trials involving more than 100 hemophilia patients that spanned a…

My husband, Jared, and I have now been married five years! In celebration of our anniversary, I dedicate this letter to him. To my dearest husband (and our daughter’s one and only “bleedy boy“), Five years have passed since the day we made a lifelong commitment to each…

Recently, I came across an old DVD recording of a Fourth of July celebration on a hot summer day in Baytown, Texas. Many families had gathered on blankets and lawn chairs to celebrate with one another and watch the evening’s entertainment. The first star of the production was…

The protein missing or defective in people with hemophilia A, called blood coagulation factor VIII (FVIII), is able on its own to stimulate immune responses in a mouse model, a study suggests. This immune response to FVIII is dependent on a set of distinct immune cells within the spleen,…