Bersiporocin, an oral therapy for idiopathic pulmonary fibrosis (IPF) now being tested in a Phase 2 clinical trial, has been granted orphan drug status in Europe by the European Medicines Agency (EMA). The EMA gives this designation to treatments that have the potential to improve care for people with…
When I was diagnosed with idiopathic pulmonary fibrosis in early 2017, my care team went to work ensuring my quality of life was the best it could be given the circumstances. A bilateral lung transplant in 2021 offered me a second chance at life, but getting the transplant required a…
For the 14th year, a cast of Broadway luminaries will take the stage for the Pulmonary Fibrosis Foundation’s (PFF) largest fundraiser, Broadway Belts for PFF! The March 18 gala, which may also be viewed virtually, will raise funds and awareness for the more than 250,000 U.S. residents thought to…
Seven years ago, I sat in a hospital examination room in shock. I had just been diagnosed with idiopathic pulmonary fibrosis (IPF) and given two to five years to live. The doctor suggested I get my affairs in order. Then, before I knew it, my care team had begun…
The U.S. Food and Drug Administration (FDA) has approved Fibresolve, an AI or artificial intelligence-based software that’s designed to help — noninvasively — in the diagnosis of idiopathic pulmonary fibrosis (IPF) and other lung diseases marked by fibrosis, or scar tissue buildup. This marks the first FDA clearance of…
I’m in the business of validating people’s feelings. As a therapist, I’m called upon to listen actively to clients and validate how difficult a particular situation has been for them, even as they work through it. I enjoy this part of my work because everyone is affected in unique ways…
Life with a rare disease is often a journey of discovery. With each test comes the possibility that my healthcare team will identify a new issue I’m facing. I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017 and had a bilateral lung transplant four years later. Because of…
Almee, an investigational app that offers personalized treatment to help people with pulmonary fibrosis (PF), was found to significantly reduce anxiety levels in PF patients who participated in a pivotal randomized study. Positive results from the COMPANION (NCT05330312) study were announced by Alex Therapeutics and Vicore…
Traveling is complicated with a chronic illness. When you require supplemental oxygen to breathe or struggle with hypoxia on airplanes, things become even more challenging. This has been my experience with idiopathic pulmonary fibrosis (IPF). IPF is a life-threatening and progressive lung disease that often leads to…
What happened? Where did 2023 go? How can it be Jan. 2, 2024? Time seemed to drag when COVID-19 began to ravage the U.S. Many people with rare diseases, including the pulmonary fibrosis (PF) community, were heavily affected by the isolation. And not just patients, but caregivers, too.
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