Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

Many call it “heart attack snow.” It’s heavy. It’s backbreaking. Last week, we went head-to-head. In “Terminator” terms, the snow was the advanced T-3000 cyborg. I was “Pops,” the old T-800 out to prove I wasn’t obsolete. I’m used to sarcoidosis putting me through the wringer emotionally. But fluffy…

It was what I least felt like doing that Saturday morning: learning something new and being among a group of people. But the friend who urged me to attend a mixed media collage art class at the local library must have sensed it was exactly what I needed. Since…

Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…

The more visits I have with a physician, the harder it is to cut ties. Which is why, between breaths behind a face mask, I was relaying my complaint again. It was a loop I had been stuck in since summer. Driving to the appointment that December morning, I hoped…

Oops, I did it again/ I fell on the floor/ I’m in so much pain/ (Oh baby, baby)/ Now my arm’s in a cast/ Let’s hope it’s the la-a-a-ast/ I’m not that confident (sigh).  Kerry is always coordinated, even with her cast. (Courtesy of Kerry Wong) That’s how that…

The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. Yet even with its enormous resources, the FDA these days relies more and more on patients to…

My left leg has been numb from the knee down for months. It started with a couple of toes and climbed its way up. Every once in a while, the numbness and tingling will get ambitious and trek all the way up my left side, dulling everything along the…

Pain throws down the gauntlet the moment I wake up in the morning. As I’m lying in bed, taking stock of my symphony of aches, pain sends its troops with a message: “Pull the covers back up and maybe we’ll show you mercy. But we make no promises if you…

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. Now, the good news: You already know how to face loneliness and adversity — qualities that make you far stronger…