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…

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…

I have been struggling at home lately. I always pictured a peaceful and fulfilling married life. As a wife, I thought I would be queen of my home. Each corner of our house would be filled with my favorite decorations, and our fridge, pantry, and bar would be…

Recently, I’ve taken to the ukulele. I love its diminutive size, how its four strings (versus six on a guitar) are perfect for my tiny hands, and the happy sound it produces. (Our neighborhood ukulele store is aptly named Happy Music.) In the past month, I’ve purchased a couple of…

My dear husband, I won’t do everything for you. I may take on some of your physical responsibilities when your body says “no for now,” but I’ll leave you to do all the thinking and strategizing you can do for our family. You may have hemophilia and a seizure disorder,…

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases. “The RareLaunch program is central to NORD’s mission and history — community…