Celebrating 1 Year of Finding My Path Through Writing

It’s been one year since I joined Bionews, the publisher of Pulmonary Fibrosis News, as a columnist. At that point, I was trying to find my way in life with lymphocytic interstitial pneumonia (LIP) amid the COVID-19 pandemic. I never thought I’d have so much to write about.

Rare Disease Day Panel Opens Window to Patient Experience

Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…

Caregiving Was a Catalyst to Telling Rare Disease Stories

I have several roles here at Bionews, the parent company that publishes Pulmonary Fibrosis News and other rare disease websites. I started with this humble column and eventually joined the forums team as a co-moderator. My most recently acquired title is “columns lead,” in which I manage and mentor…

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons and…