A genetic mutation for hemophilia has passed through five generations of my family. We can trace it from my great-grandfather, known simply as a “bleeder,” to my nephew. My great-grandfather passed the genetic mutation to my grandmother. My grandmother passed the genetic mutation to my father. My father…

The recent Rare Blood Disease Summit sponsored by Genentech highlighted a critical perspective pertinent to me: “Mild is the most dangerous word in hemophilia.” I wholeheartedly agree with this statement as a person with mild hemophilia B and von Willebrand disease. Mild hemophilia is distinguished…

SerpinPC, a potential treatment for all types of hemophilia, from the drug development pipeline at Centessa Therapeutics, was found to be safe and to reduce patients’ bleeding episodes for up to 1.5 years. In fact, the therapy candidate has the potential to nearly “zero out” the number of…

It was a sunny, gorgeous day, and I was meeting a friend at one of the most beautiful places in California, where the Klamath River feeds into the Pacific Ocean. River otters and sea lions gather there to feed off salmon. Imagine our luck: The parking lot was open! We…

In the realm of hemophilia, I believe the current classification system oversimplifies a far more intricate reality. Severe, moderate, and mild hemophilia are classifications based on the amount of clotting factor present in a person’s blood. Hemophilia is a genetic disorder that impairs the blood’s ability…

In this video from BloodFeed – Hemophilia Bleeding Disorders Media, actor Brian Williams (who plays hematologist Dr. Young in the online comedy Stop the Bleeding) takes viewers on a tour of a hemophilia treatment center (HTC). MORE: Three tips for coping with a hemophilia…

In this video from BloodFeed – Hemophilia Bleeding Disorders Media, actor Brian Williams (who plays hematologist Dr. Young in the online comedy Stop the Bleeding) takes viewers on a tour of a hemophilia treatment center (HTC). MORE: Three tips for coping with a hemophilia…

People with hemophilia A and their caregivers, as well as healthcare providers, have shown a strong interest in a new blood-testing device being developed to make blood clotting tests faster and easier to access, according to a recent study. The device, called EnzySystem, allows for measuring the activity of…

Today, when girls and women struggle to obtain a hemophilia diagnosis and proper treatment, I am angry. We need to do better. A timely diagnosis is crucial, as delayed testing or treatment can endanger women — especially if they are in an accident that causes bleeding…

A new hemophilia management program was launched as part of a collaborative agreement between Magellan Rx Management and Health New England to standardize treatment practices and optimize pharmacy and medical benefits use and costs. The goal is to provide better overall quality of care at reduced costs. Among…