An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…
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During the course of her mother’s six-year battle with idiopathic pulmonary fibrosis (IPF), caregiver Taleena Koch felt alone. Now Koch, 54, hopes to change that feeling for the thousands of people involved in her Breathe Support Network. Her nonprofit group offers an online discussion…
High levels of the protein osteopontin in the blood are associated with acute exacerbations and a higher risk of death in people with idiopathic pulmonary fibrosis (IPF), a study found. These findings suggest that osteopontin may potentially be used in the future as a biomarker of IPF…
In the U.S., 61% of people with idiopathic pulmonary fibrosis (IPF) are prescribed approved anti-fibrotic therapies, namely Ofev (nintedanib) and Esbriet (pirfenidone), analysis of data from the U.S. Pulmonary Fibrosis (PF) Foundation Patient Registry shows. In turn, almost 40% of IPF patients are not prescribed either…
The U.S. Food and Drug Administration (FDA) has cleared Paragonix Technologies’ request that LUNGguard, its preservation system for transporting donor lungs, for commercial use. The request came as a premarket notification — also known as a 510(k) — which is an application to the FDA showing that…
Veteran entertainer and Tony Award winner Bernadette Peters will headline the 10th annual “Broadway Belts for PFF!” event to raise funds to fight pulmonary fibrosis (PF). Set for Feb. 24 in New York City, the star-studded evening of music, comedy, and performance is the single-largest fundraiser for…
Reducing the decline of forced vital capacity (FVC), a measure of lung function, can improve the quality of life, and lower the mortality rates and financial burden of patients with idiopathic pulmonary fibrosis (IPF), a new study has found. The study, titled “Forced Vital Capacity (FVC) decline,…
The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. Yet even with its enormous resources, the FDA these days relies more and more on patients to…
A software program called CALIPER may be useful in predicting the progression of idiopathic pulmonary fibrosis (IPF) and the effectiveness of antifibrotic treatment based on lung images taken through high-resolution computed tomography (HRCT), researchers found. The study,…
Changes in blood levels of surfactant protein-A (SP-A) — immune proteins most abundant in the lungs — can help predict treatment outcomes with anti-fibrotic therapies, including Esbriet and Ofev, in people with idiopathic pulmonary fibrosis (IPF), a study found. According to the new study, serial measurements…
