Driving home from choir practice, I noticed that my pinky felt strange. It was really stiff, and I couldn’t bend it. When I rubbed the outside of my knuckle, it hurt a lot. By the time I arrived home, it was swelling and turning black and blue. I had no…

Last week, I attended a clergy retreat at Sacramento Camp & Conference Center, in the southern mountains of New Mexico. We experienced clear blue skies and mild temperatures, as well as moments of self-reflection. One day I hiked to the top of a mountain, standing in awe of…

The U.S. Food and Drug Administration(FDA) is updating its 2015 draft guidelines for drug discovery in rare diseases, with new guidance on natural history — how disorders such as spinal muscle atrophy (SMA) run their course if untreated — the choice of “efficacy endpoints” in clinical trials,…

Our baby, Cittie, is now the textbook specimen of a toddler. My husband, Jared, often finds himself surprised by how quickly she is developing. Her vocabulary doubles by the day, and she is even learning interjections. As funny as it is to hear her suddenly screaming “Oh no!” or a…

Dear (young) person with disability, I hear you. You’re having a tough time with money. Maybe you’re having difficulty finding a job. You probably have the qualifications — you may have gone to college and had internships here or there — but no company will accept you. You blame it…

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

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…

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…