A little-known government entity within the National Institutes of Health (NIH) is helping to lead U.S. efforts to speed up the development of therapies for some 7,000 rare diseases. The Office of Rare Diseases Research (ORDR), headquartered in Bethesda, Maryland, was established in 1993Â within the NIH Office of the…
NIH Agency Pioneers Collaborative Research into Rare Diseases
The University of California is creating a research institute that springs out of the blocks quickly to provide a faster, more cost-effective way of studying idiopathic pulmonary fibrosis (IPF). Scientists call such structures pop-up institutes. It takes years for typical university institutes to go from the planning stage to functioning.
All pulmonary fibrosis (PF) patients go through hardships. We watch our lungs and health decline and we suffer emotional pain as we process our foreshortened lives. Grief becomes a companion as we emotionally process all we endure. This disease takes a toll on us. Talk to yourself with…
A lung-scarring disease that affects preterm infants has a tissue repair signaling problem seen in idiopathic pulmonary fibrosis, Vanderbilt University researchers report. The discovery increases scientists’ understanding of the mechanisms underlying bronchopulmonary dysplasia and IPF. It also raises the possibility of treating both disorders by targeting the signaling dysfunction. Researchers published…
NYU Langone’s Transplant Institute successfully performed its first double lung transplant on a woman with a complicated form of pulmonary fibrosis. The procedure is part of the organization’s new lung transplant program. The surgery took place Feb. 10, just weeks after the institution performed…
Boehringer Ingelheim’s signature Breathless Campaign will collaborate with Minor League Baseball this season to raise awareness of idiopathic pulmonary fibrosis (IPF). The baseball league has named Boehringer Ingelheim an official IPF awareness partner. In this role, the company will work to educate the league’s fan base about IPF,…
Because I was diagnosed with a chronic illness at 28 years old, I have received many different reactions to the news. Most people are well-intentioned, some don’t know what to say, and others share common reactions that one might expect when something unfortunate happens. I experienced a lot…
Cells’ attempts to limit fibroblast proliferation by lowering the levels of a protein called clusterin in lung fibroblasts of pulmonary fibrosis patients were found to be an insufficient strategy against fibrosis development in a recent study. Researchers, in fact, observed that decreasing clusterin leads to a deposition of extracellular…
After I was diagnosed with pulmonary fibrosis, I began evaluating the best way to spend the precious time and energy I have left. Against a backdrop of grief, I made a list of the things I wanted to complete before I passed. Some goals involved increasing…
A vast majority of pulmonary fibrosis (PF) and cystic fibrosis (CF) patients would like to have the ability to monitor their lung function at home, top-line results from PMD Healthcare’s two 2018 online patient surveys show. PMD reported that most of the PF (96 percent) and CF (93…
