The world’s biggest gathering of rare disease researchers, patient groups, pharmaceutical executives, and government officials is planned for April 10–12 in a Washington, D.C., suburb. Some 1,200 people have already registered to attend the World Orphan Drug Congress (WODC) USA 2019, set to take place at the Gaylord National Harbor…
WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April
The Pulmonary Fibrosis News Forums is celebrating its first birthday this month. As a forums moderator, I wrote information-focused columns ahead of the launch in early 2018 to give people an idea of what we hoped to achieve with this new initiative. I didn’t foresee how successful…
Poor sleep quality — assessed by full-night sleep evaluation and patient questionnaires — is linked to an overall reduced quality of life in individuals with idiopathic pulmonary fibrosis (IPF), according to a study. The study, “Quality of life in idiopathic pulmonary fibrosis: The impact of sleep disordered breathing,”…
Oral administration of omipalisib, an investigational inhibitor of PI3K and mTOR cellular signals, can reduce the activity of pro-fibrotic cells in the lungs of patients with idiopathic pulmonary fibrosis (IPF), results from a Phase 1 trial show. These findings support studies to further explore PI3K and mTOR signals as potential…
Since my diagnosis of idiopathic pulmonary fibrosis (IPF) nearly three years ago, I have changed in many fundamental ways. While my values and views and the activities I enjoy have stayed the same, my approach to life has been transformed since my diagnosis. I now try to…
About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city early next month for the 2nd International Congress on Advanced Treatments in Rare Diseases. The March 4-5 meeting, to take place at the Hilton Am Stadtpark Vienna, features 27 speakers on a variety of disorders…
Many people are apprehensive about asking for help when faced with dire situations. Fortunately, I haven’t had to ask for help with my idiopathic pulmonary fibrosis (IPF) needs. Those in my circle have stepped up in the biggest ways possible and have been there for me when I needed their…
Hello, World! For those of you who don’t know me, my name is Noah Greenspan. I am the founder and program director of the Pulmonary Wellness & Rehabilitation Center in New York City. I am also the founder of the Ultimate Pulmonary Wellness Webinar Series, the Ultimate Pulmonary…
A protein in the tumor necrosis factor (TNF) alpha family, called TRAIL, regulates a signaling cascade that promotes pulmonary fibrosis, researchers report, suggesting this protein opens potential new avenues for treating PF. The study, “TRAIL signals through the ubiquitin ligase MID1 to promote pulmonary fibrosis,” was published in the…
Patients with idiopathic pulmonary fibrosis (IPF) have, on average, only slight cognitive impairment compared to healthy people. Also, IPF patients with severe obstructive sleep apnea have worse cognitive impairment. The study with those findings, “Impact of moderate to severe obstructive sleep apnea on the cognition in idiopathic pulmonary fibrosis,”…
