It’s essential that we inform the world about struggles in the bleeding disorders community by showing them how to be advocates. We must teach our loved ones how to educate and inform those in leadership about the needs faced by those with hemophilia and other disease states resulting in clotting…

My family is preparing to move back to New Mexico. My husband’s job as a United Methodist pastor calls us to move often, so we have the moving process down to an art form. Still, it is not an easy feat. I am always in the moving mindset. Before I…

The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis for a disease that few people — sometimes even physicians — have heard of is challenging on its own merit.

My toddler, Cittie, recently got a new tricycle. She took to it instantly, although she couldn’t reach the pedals yet. The trike has a long attachment that allows us to take turns driving her around the house. Cittie was content to sit back and enjoy the ride. Now she often…

Regeneron Pharmaceuticals and Intellia Therapeutics are expanding their collaboration to develop hemophilia A and B treatments using the CRISPR/Cas9 gene editing technology. The two companies signed a six-year agreement in 2016 to develop, license, and commercialize gene editing-based therapies. “We’re pleased to expand our work…

On a recent Sunday afternoon, cabin fever got the best of my family and we headed out to see where the road would take us. Our parameters were straightforward: It had to be within an hour, and the destination had to involve water. Because local traffic has been nearly absent,…

During the summer, my sons and I usually choose a museum to visit on Fridays. It started with “MacDonald the Older” and continues with “MacDonald the Younger.” I look forward to the special times that I get to celebrate with my stinky sons. I call those moments sacred, set apart…

I am in a season of trying to pace myself. Instead of running at the track, I am walking. Instead of lifting heavy things, I ask for help. I am also finding time to rest. These are not things that come naturally to me. I always have several projects in…

Infection by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the coronavirus causing COVID-19, can induce the onset of acquired hemophilia A (AHA), a case report has found. As such, blood coagulation should be monitored closely in patients hospitalized for COVID-19, scientists said. The study, “…

Heroes come in all shapes and sizes. Sometimes, it is challenging to recognize the people in our lives who overcame overwhelming odds to remind us that life means more than merely accepting our condition. We must thrive, even when we face uncertain futures, painful treatments, or life-changing issues. Our champions,…