My oldest son, Julian, called me last Saturday evening with exciting news. He successfully auditioned to sing in a cabaret with a New York-based theater group. He’ll perform a solo at a West 34th Street theater near Times Square on June 26. I could feel the excitement through the phone…

Combining gene therapy with minimally invasive, robot-assisted hip replacement surgery safely and effectively treated severe joint damage for a 27-year-old man in China with hemophilia A, according to a case report. The approach significantly reduced the need for replacement therapy…

BioMarin Pharmaceuticals is planning to submit marketing authorization applications to the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA) seeking approval of valoctocogene roxaparvovec, its investigational gene therapy for the treatment of adults with hemophilia A, before the end of the…

Last year was a year of conferences for me — at least 10 by my count. It still amazes me that, in the hemophilia community, thousands of individuals and families are able to travel and attend these events at little or no cost, thanks to the support of event…

Fear. Millions of people are living with insane amounts of fear due to the outbreak of the COVID-19 virus. This includes fear that the food supply will be limited, fear of catching the virus, and fear of lost income. There is a lot for our world to fear. But…

My chronic pain is not caused by a bleeding disorder, but it does give me perspective on the pain my youngest son, Caeleb, endures from hemophilia. Friends stopped by on a recent afternoon to meet our new puppies, and I shared a homemade pie that was fresh from the oven.

Hemophilia in children is diagnosed at an average age of 9 months, and most children are diagnosed by their second birthday. If your pediatrician suspects your child has hemophilia, you may be concerned about their first appointment with the hematologist. To ease your worries, we’ve put together some tips to help you through…

Bleeding episodes in people with severe hemophilia A receiving prophylactic (preventive) treatment have the potential to impair patients’ health-related quality of life, according to data from a survey conducted in Europe. Even a single bleed was linked to marked medication-related and non-related health costs. In fact, in terms of…

BioMatrix Specialty Pharmacy has announced this year’s winners of its memorial scholarship program, designed to help people with hemophilia and other bleeding disorders pursue higher education. Six scholarships, each worth $1,000 and honoring people who made “unique” contributions to the bleeding disorder community during their life, are awarded…

As a hospice chaplain, I visit patients in homes and long-term care facilities. There is one facility I particularly enjoy visiting because I have a special relationship with the director of nursing. A couple years ago, I was speaking to a nurse about one of my patients when I noticed…