The National Organization for Rare Disorders (NORD) is seeking participants for its survey-based study Living Rare, which aims to better understand the real-world lived experiences of people in the U.S. with rare diseases. Living Rare, the first large-scale study of its kind in the U.S., seeks to capture the…
Focus of NORD study: Rare disease community’s lived experiences
Do you ever have one of those days? You know the kind: Nothing seems to go your way and the day ends with a huge sigh. When I was diagnosed with idiopathic pulmonary fibrosis, I learned that not every day would be sunshine and roses. Last Wednesday was a…
Enrollment is now complete in a Phase 2b clinical trial, dubbed CORAL, that’s testing nalbuphine extended-release (ER) tablets — planned to be marketed as Haduvio — in people with idiopathic pulmonary fibrosis (IPF) who experience chronic cough. That achievement was announced by Trevi Therapeutics, the U.S. company…
Fraternal organizations have long been a part of colleges and universities. It’s not uncommon to find an area around campus labeled as Greek Row. These organizations allow like-minded individuals to join together, taking hold even beyond college campuses. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in…
A Phase 1 clinical trial testing Cereno Scientific’s candidate therapy for idiopathic pulmonary fibrosis (IPF) in healthy volunteers has moved to its final part, the company has announced. This first-in-human, open-label trial is testing CS014 at single and multiple ascending doses in about 48 participants. The part that evaluated…
Here in the U.S., there is an effort underway to reduce the size of the government. You may not know that, in addition to writing this column, I’m also a senior moderator for the Pulmonary Fibrosis News Forums. I recently started a discussion about the government downsizing and asked:…
A protein called Runx2 contributes to the abnormal activity of lung cells that drive pulmonary fibrosis, a new study shows, suggesting that inhibiting this protein may be an effective strategy for treating the disease. “Our study suggests Runx2 is a potential therapeutic target for preventing or treating pulmonary…
Winter storm warning. Those three simple words never bothered me much until I was diagnosed with idiopathic pulmonary fibrosis (IPF). Afterward, those words defeated me. They were an indication of things I could no longer do. Snow, especially deep snow, was too much for me. That all came back…
Living with a rare lung disease such as pulmonary fibrosis (PF) is a daily battle that requires strength and perseverance. Many individuals, me included, face this journey with courage, often in the shadows of more commonly known illnesses. Preparing for a lung transplant is undeniably tough as well,…
Nerandomilast, an oral treatment being developed by Boehringer Ingelheim, bested a placebo at preserving lung function in adults with progressive pulmonary fibrosis in a Phase 3 study, according to top-line data announced by the company. With those results, nerandomilast met the primary endpoint, or goal, of the study,…
