The other day, a neighbor stopped me in the walkway and asked, “Are you feeling OK?” I said yes, I was fine, though I was a little surprised by the question. Then came the explanation: They’d read I have a blood disorder. That moment stuck with me. On the outside,…

Stop the Bleeding! is a comedy web series set at a fictional non-profit organization. The award-winning series features various members of the dysfunctional organization and the conveniently placed hemophilia treatment center (HTC) next door in a mockumentary style. MORE: Six of the best mobile apps for managing…

It’s important for anyone with a chronic illness to eat a balanced diet, but children and adults with hemophilia should also include iron-rich foods as some of the body’s store of iron is lost during bleeding. MORE: How diet can help with hemophilia management There are two different types of…

Due to the identification of new adverse events, Sanofi Genzyme has placed a dosing hold on its full clinical development program for fitusiran, an investigational treatment for hemophilia. The decision was announced in a joint statement from the World Federation of Hemophilia, the European…

One of the challenges for individuals with hemophilia — whether severe, moderate, or mild — is bleeds. Often people with hemophilia will struggle with bleeds into their joints. The bleeds are painful and limit mobility. If left untreated, they can cause long-term damage, such as arthritis.

I’ve lived in New Mexico for 20 years, but I only recently visited the Loretto Chapel in Santa Fe. The chapel is known for its spiral staircase, built in 1878 with wooden pegs only, no nails. The staircase rises 22 feet to the choir loft without any central support.

The effectiveness of liver-directed, viral-based gene transfer — the most used experimental gene therapy approach for hemophilia A — is significantly reduced in mouse models of hemophilia A relative to healthy mice, a study shows. This limitation was associated with a pronounced reduction in fenestrations — cell surface…

At times I struggle with documenting my journey as a caregiver for a loved one with a bleeding disorder. I can’t offer medical advice because I am not an expert. The most I can do is share my experiences and hope that something I write might speak to someone…

A blood test to determine the amount of active factor IX — the clotting factor that is missing in hemophilia B — in patients ages 2 and older is now available in clinical labs in Canada, the European Union, Australia, and New Zealand. The test, called CRYOcheck Chromogenic…

The investigational gene therapy Roctavian continues to effectively and safely prevent bleeding episodes and the need for clotting factor VIII replacement therapy in adults with severe hemophilia A, five-year data from a Phase 1/2 study show. BioMarin Pharmaceutical, the therapy’s developer, plans to share the data in…