Finding Community Within the Chaos

Living through a pandemic means that people around the world are having new and uncomfortable experiences. Many, including me, are afraid. We fear for our health and for our loved ones. We fear for our economy, finances, businesses, and futures. I don’t want to diminish or ignore those fears, but…

A class of molecules called matrix metalloproteinases (MMPs) and tissue metalloproteinase inhibitors (TIMPs) show promise as biomarkers of the presence of idiopathic pulmonary fibrosis (IPF), according to a new study. MMPs and TIMPs are present at elevated levels in the bloodstream of IPF patients, and…

The news of organ transplants being paused at several medical centers around the world amid the COVID-19 pandemic is deeply troubling. As a patient living with idiopathic pulmonary fibrosis (IPF), I’m concerned, because ultimately, a lung transplant will be the only thing to save my life. I also…

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…

Algernon Pharmaceuticals announced that it submitted a request for the final approval needed to open a Phase 2 clinical trial in Australia evaluating NP-120 (ifenprodil), a repurposed compound, as a treatment of idiopathic pulmonary fibrosis (IPF) and…

A protein fragment produced by bacteria commonly found in the lungs of people with idiopathic pulmonary fibrosis (IPF) promotes lung cell death and acute exacerbations, a study shows. “We discovered salt-loving bacteria in the lungs of patients with pulmonary fibrosis, and these bacteria secrete a peptide [a protein fragment] that marks…

Engineered models of the lung and trachea replicate the cellular dynamics found in living organisms better than other models used to study these cells in culture, a new study suggests. These engineered artificial lungs and tracheas may be more suitable to study cell-based therapies for lung diseases like pulmonary fibrosis,…

Rare disease patients and caregivers have a lot to teach the world right now. No matter your role in the rare disease community, I would be willing to bet this is not the first time you’ve sheltered at home to avoid infection. While we may be used to taking precautions…

At 3 a.m. on July 6, 2003, Miami resident Jeffrey Goldstein got a call that would change his life. Doctors at the Duke University Lung Transplant Clinic had found a lung donor match for Goldstein, who had been diagnosed with pulmonary fibrosis two years earlier.

The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. The event’s sponsor, the National Organization for Rare Disorders (NORD), said it will still take place at the…