Coping with a rare disease can be lonely. After I was diagnosed with lymphocytic interstitial pneumonia (LIP) in 2019, my world crumbled and shock set in. I started searching for answers on the internet, looking for any research about my illness, and talking with other patients. It’s a…
Despite Our Differences, the Rare Disease Community Is in This Together
You see them before and after you see a doctor. They are often the first person you see upon waking from anesthesia. They hold your hand during the difficult part of a procedure. They see you at your weakest state and help return you to health. Sadly, in some cases,…
The U.S. Food and Drug Administration (FDA) has granted fast track designation to PLN-74809, now in a Phase 2 clinical trial, as a potential treatment for idiopathic pulmonary fibrosis (IPF). This designation is intended to help speed the development of treatments aiming to address unmet medical needs for serious…
A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…
Less than 14 months after stopping its GALACTIC-1 study for certain patients due to safety concerns, Galecto has hit its enrollment target for the Phase 2b trial — now under a revised protocol — testing its investigational inhaled therapy GB0139 for idiopathic pulmonary fibrosis (IPF). Galecto had resumed trial…
Are there sounds you associate with your happy place? Perhaps it’s a smell. For me, it’s the sound of a metal whisk in a metal bowl, the rhythm of a chef’s knife prepping ingredients, the aroma of a mirepoix as it begins to sweat. Food is my love language. I’ve…
A new multiphase educational collaboration seeks to slash the time it takes for many people to receive a diagnosis of interstitial lung disease (ILD), including pulmonary fibrosis (PF). The Three Lakes Foundation and the American College of Chest Physicians (CHEST) will work together to heighten disease awareness among healthcare…
The first patient has been enrolled in a U.S. clinical trial evaluating the efficacy and safety of a new artificial intelligence-based app, called Almee, that’s designed to treat anxiety in people with idiopathic pulmonary fibrosis (IPF). Almee, developed by Vicore Pharma, is an experimental digital therapy that delivers…
Although the past two years have been traumatic and isolating, I believe some good things have emerged from the COVID-19 pandemic. It can be hard to reframe our thoughts to focus on the positive, but if you’re like me, these years have allowed for many moments of deep self-reflection.
Organizers say that just a few tickets are still available for this year’s rendition of the Broadway Belts for PFF! fundraiser, benefitting the Pulmonary Fibrosis Foundation (PFF). The annual event, slated for April 29 at the Edison Ballroom in New York City, again will bring together an array of…
