In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…
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A large-scale analysis of multiple genome-wide studies has identified three new gene variants — mutations in DNA sequences — associated with idiopathic pulmonary fibrosis, a study reported. Two of these genetic variants are not directly linked to fibrosis,…
Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…
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…
Inhaling secretions produced by lung stem cells could be therapeutically beneficial for those with idiopathic pulmonary fibrosis (IPF), a preclinical study has suggested. The study, “Inhalation of lung spheroid cell secretome and exosomes promotes lung repair in pulmonary fibrosis,” was published in the journal Nature…
ART-123 (thrombomodulin alfa) failed to prolong the survival of patients with idiopathic pulmonary fibrosis (IPF) who have acute exacerbations, a study found. The study, “Thrombomodulin alfa for Acute Exacerbation of Idiopathic Pulmonary Fibrosis: A Randomized, Double-blind, Placebo-controlled Trial,” was published in the American…
A decline in back muscle mass is linked to poor clinical outcomes in patients with idiopathic pulmonary fibrosis (IPF), and can be used as an independent predictor of disease prognosis, a study found. The study, “Early decrease…
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those looking to begin the complex process in its Feb. 20 webinar. William Whitman…
Although 50,000 new cases of pulmonary fibrosis (PF) are diagnosed each year, a national survey found that 86 percent of U.S. residents are unfamiliar with the disease’s symptoms. The online National Awareness Survey from the Pulmonary Fibrosis Foundation (PFF), was completed by 2,013 U.S. adults, and…
Researchers at the University of Pittsburgh and the University of Delaware received funding for their research into innovative therapies for specific disease areas, including pulmonary fibrosis (PF). CSL Behring and the University City Science Center awarded $250,000 each to Cecelia Yates, PhD, from the University…
