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…
Treatment with a molecule designed to activate the SHP-1 protein led to prolonged survival and alleviation of disease-associated lung changes in a mouse model of idiopathic pulmonary fibrosis (IPF), a study found. SHP-1 activation appeared to exert its protective effects by inhibiting the survival and pro-fibrotic activity of a…
Ofev (nintedanib) more than halved the rate of lung function decline in patients who developed interstitial lung disease (ILD) associated with rheumatoid arthritis (RA), an inflammatory disease. That’s according to data from INBUILD (NCT02999178), a Phase 3 trial of more than 650 adults with progressive fibrosing ILDs in…
July is a month of celebration at our house. Though it begins with the Fourth of July, my personal “Independence Day” is on July 10 — the day I received a double-lung transplant in 2021. It’s a celebration tempered with reverence for the beautiful lungs my donor gifted me.
A Phase 3 trial of pamrevlumab, an experimental therapy from FibroGen to treat idiopathic pulmonary fibrosis (IPF), failed to meet its primary goal of slowing lung function decline. General safety and tolerability were seen in treated patients in ZEPHYRUS-1 (NCT03955146), which tested 48 weeks of pamrevlumab’s use…
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