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…
Covid-19
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…
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…
It’s hard to focus on anything other than the COVID-19 outbreak happening around the world. News reports share grim statistics and other daily details about surges in new cases, the climbing death toll, and stories of those who refuse to comply with important social distancing practices. Social media…
Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based nonprofit she chairs will see the approval of 1,000 new rare disease therapies by 2027. That group, the International Rare Diseases Research Consortium (IRDiRC) —…
Coronavirus news hasn’t gotten any less scary since I wrote about it two weeks ago. At the time of writing this column, the virus is in all 50 states and four U.S. territories. More than 100 U.S. citizens have died from the illness. I wasn’t planning to write about…
Like my readers on Pulmonary Fibrosis News, I’m doing my best to stay abreast of the global COVID-19 outbreak. With that said, I am finding it pertinent for my mental health to take breaks from social media and news reports which are inundating us with information surrounding this…
The novel coronavirus that causes COVID-19 is slowly working its way around the world. Along with the spread of this new strain of coronavirus, fear and misinformation have been making the rounds. Since the COVID-19 virus has made its way to the States, the uncertainty and unknowns about the…
You literally can’t miss it in the news these days — millions (if not billions) of people all over the world are talking about the increasing spread of “the new (novel) Coronavirus.” According to the Center for Disease Control (CDC), the earliest cases of COVID-19 began in the city of…
