As caregivers of loved ones managing chronic illness, we face questions that, when first heard, knock us to our knees. For my family, it was not so much a question as a statement. When “MacDonald the Older” was 4 years old, we set up to infuse through his port-a-cath…

Sometimes being different is a good thing. You display your unique characteristics and qualities to the world through your clothing, hair, and makeup. Your actions reveal your views on social justice, and you voice your political views because your beliefs are a key part of who you are. Sometimes, others…

My husband, Jared, and I both share an interest in psychology and human relationships. We often bond over discussions about mental health and the way human beings interact. As a couple affected by hemophilia and mental health issues, we find such conversations therapeutic as we are able to share our…

Despite the COVID-19 pandemic, Catalyst Biosciences has successfully completed a Phase 1 trial of marzeptacog alfa activated (MarzAA), with results supporting the treatment as an on-demand option for bleeding episodes in people with hemophilia A or B. The study, MAA-102 (NCT04072237), was designed to assess…

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,…