I like my cabinets neatly arranged. But the kitchen cabinets are often hit-or-miss in the organization department. For example, the cabinets that house plastic lids and containers can be treacherous. When organized, the cabinet allows us to see what’s available. Every cover matches its proper container, and items sit neatly…

An analysis was highly critical of the Orphan Drug Act, used by the U.S. Food and Drug Administration since 1983 to stimulate research into rare diseases. The study found that the act is not “sufficiently” effective in meeting the needs of patients with less common diseases, like hemophilia, while pharmaceutical companies are finding it profitable, with…

To encourage more women to take part in disease research, the Patient-Centered Outcomes Research Institute (PCORI) has chosen the Hemophilia Federation of America (HFA) and its FIRST project to receive a Eugene Washington PCORI Engagement Award. The HFA’s FIRST project stands for Females in Research Sharing and…

The National Hemophilia Foundation (NHF) has changed its name to the National Bleeding Disorders Foundation (NBDF) to reflect its support for people with inheritable blood and bleeding disorders other than hemophilia. The new name includes a new visual identity and logo. The foundation also unveiled a new tagline…

Artificial intelligence (AI) in healthcare? You’ve got to be kidding me! What a ridiculous idea! That sounds horrifying. We don’t want computers diagnosing us; we want trained, experienced professionals who can think for themselves. As someone with hemophilia, I felt this way. Strongly. Until last week. As I’ve mentioned…

As a hospice chaplain, I visit patients and their families as they are in their last months and days of life. It is humbling. Whether they’re at home or in a nursing home, these patients have something in common: They are being cared for by others. Family caregivers are the…

For people with hemophilia B, switching to Rixubis (nonacog gamma) as a factor IX (FIX) replacement therapy was not associated with increased bleeding rates, dose changes, adverse blood clotting events, or the development of inhibitors among patients with moderate to severe forms of the disease,…

I use a handicapped placard for my youngest son, Caeleb, who has hemophilia and deals with complications from the clotting factor used to treat his illness, which causes him to have pain. Caeleb, 15, participates in his school’s marching band and practices after school four days a week. At the end…

Many years ago, when hemophilia came into my family’s life, rearing its ugly head like a lion ready to devour its prey, we held on to anything we could. As the chaos of chronic illness overtook our lives, my wife and I made plans to help our children manage their…

The U.K. charity Veganuary challenges people to eat only vegan foods in the month of January as part of an effort to promote health, protect the environment, and end animal farming. People choose to follow a vegan diet, which excludes all animal products such as eggs, dairy, and meat,…