Note: This column discusses an upcoming FDA-NIH Rare Disease Day event, which planned to bring together members of the rare disease community with healthcare providers, researchers, lawmakers, and more at the NIH main campus in Bethesda, Maryland. That event has since been postponed. Stay tuned for further announcements. There’s a…

I recently came across a blog post on MedPage Today titled “A Letter to Patients with Chronic Illness.” Although it was written nearly 15 years ago, it’s as relevant today as it was then, revealing oft-obscured insight into the frame of mind of our doctors. Its author, “Dr. Rob,” shares…

Along with so many others around the world, I’ve spent the past two months utterly obsessed with the movie version of “Wicked.” I saw it on the big screen (twice), read the book (again), and bought the digital version just minutes after it became available. I’ve watched it…

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 Foundation for Sarcoidosis Research (FSR), a nonprofit dedicated to finding new treatments and improving care for people with sarcoidosis, has nominated 14 new members to its scientific advisory board (SAB), with an aim of further enhancing research and patient care. The FSR SAB includes world-renowned researchers…

Two early-career scientists each were awarded $150,000 Sarcoidosis Research Fellowship grants from the Foundation for Sarcoidosis Research (FSR) to support projects that aim to investigate the causes of sarcoidosis and improve patient outcomes. The fellowships were awarded to Greer Waldrop, MD, PhD, at the University of California,…

A 30-year-old man with renal cell carcinoma — a type of kidney cancer — developed sarcoid-like reactions in his spleen, liver, and lungs, which went away after the tumor’s removal, suggesting that such reactions arose from an unusual immune response against the tumor. The man’s case was described in a…

Years ago, I heard someone in the chronic illness community say they were “medically retired.” It was before I had fully accepted the idea of being disabled, and I thought it was the greatest euphemism I’d ever heard. Until recently, that’s how I described myself, too. But now that…

The Foundation for Sarcoidosis Research (FSR) has launched the Coalition for Clinical Trial Equity, aimed at increasing the representation of Black and African American sarcoidosis patients in trials testing potential treatments. Despite Black Americans being 2.5 times more likely to have sarcoidosis than white Americans, these patients…

I think I need a Bubble Wrap suit. Yep — a full-sized, head-to-toe suit made of industrial-strength protective Bubble Wrap. That (not Obi-Wan) just might be my only hope. My medical records indicate that I’m a “fall risk.” As much as I hate seeing that, I get it. I fall…