The first Blood Advocacy Week, which promotes activities to showcase the importance of maintaining a safe and continuous blood supply and advocate for changes in policies that strengthen blood supply chains in the U.S., will take place April 24–28. Hemorrhage, or bleeding, is the leading cause of preventable death…

In recognition of Rare Disease Day 2018, Bionews Services — which publishes this website — will attend and report on three relevant conferences in the U.S. dealing with policies and programs of importance to patients and their families. The three are among 50 events in 32 states…

Note: This column describes the author’s own experiences with factor replacement therapy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. It is 10:30 a.m. and I am having my blood drawn. I am doing a trough level test, which…

Lately I’ve been feeling stuck. My life seems to have taken on the appearance of an infinite to-do list. The moment I tick off a box, three more appear. Every day, I am literally out of breath running errand after errand, with the ultimate goal of somehow staying afloat. Bills…

“It’s nothing.” That phrase is often associated with women. Many have argued that women tend to obscure their feelings to avoid hurting other people, especially their partners. As a woman and a wife, I question this generalization, mostly because my husband says the phrase more than I do.

As a mom and piercing enthusiast, I’ve always looked forward to the day my daughter, Cittie, would want her ears repierced. They were pierced when she was a baby, but her curiosity back then led her to constantly play with her earrings, which caused an infection. Her father and my…

Climate change has been a hot topic in our circles lately. We feel it very much in the Philippines, where hot summers in the months of April and May have quickly turned into a season of strong typhoons and dangerous floods. Recently, a major typhoon hit the province of…

My husband, Jared, and I are in an interesting stage of our parenting journey. Our daughter, who is almost 4, will be going to preschool soon, but for now, she spends almost every day with us at home. She has a rather introverted temperament, so most of the…

Raising children is like building a house. For those of us who manage chronic illness and other disorders, our floor plans may look a little different, but at the end of the day, we all want our loved ones to be strong and sturdy, and ready to face life’s…

Last week I hit a significant personal milestone. In order to keep myself mobile and healthy, I ride a recumbent indoor bike — a lot! I used to ride over 100 miles a week. Riding my bike has kept me and my joints healthy. It’s also helped…