Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, especially for rare disorders, has a ways to go in the United States. No state today tests for all 35 disorders recommended under a federal screening panel, and even in those that come close, rare…

I lost some money today during an online transaction. It was 3,150 Philippine pesos (around $60). The amount was a client’s payment for a product she had bought from our online jewelry store. That store is our bread and butter. Currently, we are struggling due to the celestial prices of…

My husband, Jared, and I are currently in the process of looking for preschools for our daughter, Cittie. She’s almost 4, but sometimes she acts and speaks as if she’s much older. Cittie often tells us that she wants to go to school. Although we refuse to rush her…

Needle. Vein. My eyes shift back and forth. Needle. Vein. Which vein is large enough to hit without blowing, but small enough to anchor well? Tourniquet, needle, vein, syringe. I hate infusing. I HATE this. Well, tonight I definitely hate this. Maybe I haven’t eaten enough, or perhaps it’s due…

Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — a rather nebulous term that means different things to different people. “Recently, there’s been much more of a focus on Quality of Life (QoL) issues, real-world evidence and patient-reported outcomes,” said…

I must admit that, as a father, I dreamed of greatness for my sons. While Cazandra, my wife, was pregnant with each of my boys, I envisioned a global career for them that would transform the world. With my measurement of success as a guiding light, I imagined the…

Our family took a recent trip to White Sands, New Mexico. The dunes were amazing. I had thought that my feet would burn due to the heat. However, I was pleasantly surprised to realize that the sand was cold. I enjoyed walking barefoot as we climbed to the top of…

Researchers at the Birjand University of Medical Sciences and colleagues investigated the immunity status of hemophilic patients against hepatitis A, and the need for hepatitis A vaccination in that patient population. Findings indicate that a significant proportion of hemophilic patients under age 20, who were evaluated in the study, had no immunity…

Many of us resume our schedules after the holidays, when we start a new year. We recommit ourselves to following a health plan or finding ways to let go of past hurts. Just to be clear, I didn’t say New Year’s resolutions. When we decide to redirect unhealthy behavior and…

Many years ago, while working in the association management world, I had a director who challenged his managers (including me) to calculate the “true” cost of every program we proposed. My director’s challenge was not merely a budgetary task; it was an exercise in extreme critical thinking that moved us…