The U.S. Food and Drug Administration (FDA) has agreed to review an application seeking the approval of Ofev (nintedanib) for children ages 6 to 17 with fibrosing interstitial lung diseases (ILDs). If approved, Ofev would become the first and only therapy available to treat children with fibrosing ILDs, according…
When is a larger number the better choice? It depends. Recently, I’ve noticed some people in the pulmonary fibrosis (PF) community embracing numbers in studies without understanding their context. In terms of dollars, bigger numbers are better if you’re talking about savings, but smaller numbers are better if you’re…
People with Sjögren’s syndrome-associated interstitial lung disease (ILD) who develop pulmonary fibrosis (PF) have poorer survival than those without PF, a study in Taiwan finds. Researchers found that continuously low albumin levels — a sign of inflammation — could act as a risk factor for developing PF. A smaller…
A three-protein signature can be used to differentiate between idiopathic pulmonary fibrosis (IPF) and other lung disorders and may be a noninvasive biomarker of the rare disease, according to a new study. While the scientists stressed that further research will be needed to validate the…
How much of a powerhouse in the world of rare disease medicine do you have to be to effect change? Advocacy is tough, especially when you’re trying to influence organizations that are responsible for federal policy. So where to start? How about starting with a single voice? The biblical story…
Despite having a support group and talking with others who have the same condition, I haven’t gleaned everything I need to know about pulmonary fibrosis. I’m still walking in the shadows of this disease, trying to find a semblance of my pre-diagnosis self. Someone in my support group asked,…
People with shorter telomeres, or chromosome “caps,” may be at a greater risk of developing idiopathic pulmonary fibrosis (IPF), a study reported. This work “also provided some interesting genetic evidence to prove that obesity and exposure to tobacco smoking as a fetus might also contribute to the development of…
Bridge Biotherapeutics has joined the Prognostic Lung Fibrosis Consortium, known as PROLIFIC — a global nonprofit working to speed the development of personalized treatment strategies for pulmonary fibrosis (PF), The long-term goal of PROLIFIC is to develop tests to detect biomarkers of distinct stages of the rare…
Last April, COVID-19 took up residence in our house again — or so we thought. My husband, Jonny, had a raging set of symptoms, and I had a sore throat. Our at-home tests gave mixed results. After a week of quarantining, our PCR tests came back negative. Negative?…
Have you ever experienced a period in your life when nothing seemed to go right? While that may seem an odd question for those in the rare disease community, in my case, sadly, it’s not rhetorical. June has altered some of the best-laid plans, and that trend has flowed into…
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