Mistakes can be costly. The damage of a single mistake can cost a few dollars or an entire livelihood. In an ideal world, we’d learn our lessons before we had the chance to make any mistakes. That way, we could avoid ever making them. It’s like going to school,…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

In our work as professional online sellers, my husband, Jared, and I occasionally encounter difficult clients. Sometimes they send several messages to our social media channels outside of our office hours. Or they’ll threaten to leave a negative rating because of an odd hiccup in our services. And don’t…

I will never forget the evening in the mid-80s when my parents sat my brother, my sister, and me down for a critical conversation. They told us that my father had HIV. There was a very good chance he would die before my sister graduated from…

When I was younger, I drew up several vision boards outlining my dream life. I simply listed my goals and the age by which I wanted to achieve them. I remember being 10 years old and writing in my diary with such strong conviction that I needed to own…

In support of Bleeding Disorders Awareness Month in March, the Plasma Protein Therapeutics Association (PPTA) is providing a global outlet for patients who wish to share their experiences, advocate for therapy access, and thank plasma donors. The campaign — called “How Is Your Day?” — seeks to heighten awareness of…

Navigating the holidays can be taxing, even in the best of times, even in the best of families. Navigating the holidays with a bleeding disorder adds to the holiday challenge. Navigating the holidays with a bleeding disorder during a global pandemic? Well, that may be a bit…

In the middle of a work meeting, I stumbled upon an intriguing concept that resonated with me on a personal level: the good-better-best goal system. This is a goal-setting approach that allows you to set goals in three tiers that align with your individual capabilities. As I delved…

My husband, Jared, doesn’t need a gym anymore, or dumbbells, or fancy machines. These days, all he needs is the floor, a bit of space, and his body. He still loves the gym and would gladly pick up free weights when the opportunity arises, but there’s something quietly powerful about…

The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both the 1983 Orphan Drug Act and NORD’s founding at a dinner tonight in Washington, D.C. The 2018 Rare Impact Awards, to be held at the Andrew W. Mellon Auditorium, will be webcast via Facebook for those…