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…

I’ve been diving deep into entrepreneurship lately. I’m striving to learn everything I can about business — and trying to understand its darkest secrets — in hopes of attaining a higher level of success. I consider this a crucial step toward achieving one of my biggest and most important life…

We’ve all had them: those amazing flings that morph into less-than-ideal relationships. During the initial honeymoon phase, the person we are with appears to do nothing wrong. At that moment, we are certain that this time is different. We believe that…

Recently, news about a deal on airfare started making the rounds in our group chats. Here in the Philippines, these sales tend to appear when people start thinking about summer travel. Cheap fares, beautiful destinations, and the thrill of booking something spontaneous can be hard to resist. Some of my…

My youngest son, Caeleb, is home from college for spring break. He has no big trips to far-off hot spots planned. Instead, he’s in his room, enjoying the comfort of his bed. Our fur babies, Laggie and Hildie, enjoy spending time with their favorite human. Caeleb’s love for art and…

Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic,…

My husband, Jared, and I were recently captivated by the valedictory of Val Llamelo, the 2023 top graduate of the University of the Philippines. His address garnered widespread attention on social media for its criticism of “inspiration” and the societal issues it masks. These points resonated deeply with…

I got home from work and checked my mail. I had received another notice from an “impartial third party” stating: Dear Ms. Horowitz, We have received an inquiry from your insurance company and we have determined your treatment is medically necessary. You are…

“Let me see if I’m hearing you correctly: If I get the lip biopsy and it’s positive, it’ll confirm that I have Sjögren’s syndrome. If I get the lip biopsy and it’s negative, I likely still have Sjögren’s syndrome and the treatment plan I’m on won’t change either way?” The…

Many in my millennial generation dread adulting. The idea of surviving in the real world without the comfort of a family safety net is daunting. Young adults who are barely scraping by can feel alone and isolated. I was thrust into the world of adulting fairly early. In our mid-20s,…