Patient Advocacy Groups Worldwide Plan Events to Mark Rare Disease Day, Feb. 28

As a PF patient, I love many hobbies that I can no longer do. I miss the normal activities of life that are now too cumbersome or simply wear me out. One of the pastimes I can still enjoy is going to the movies. This is something I…

If you have read my previous columns, you are likely aware that my life before being diagnosed with idiopathic pulmonary fibrosis (IPF) was very different than it is now. This is something I often write about because I can’t believe the dramatic transformation from who I was…

An enzyme can start a chain of events that leads to cells involved in tissue scarring reversing their fibrosis-generating activity, British and American researchers have discovered. The study dealt with the enzyme’s effect on myofibroblasts — cells involved in wound healing and inflammatory response. The discovery could lead to new therapies for the lung scarring…

Kadmon’s KD025 slowed the progression of idiopathic pulmonary fibrosis and patients’ decline in lung function, a Phase 2 clinical trial shows. The IPF patients in the open-label trial (NCT02688647) had previously been treated with Genentech’s Esbriet (pirfenidone) or Boehringer Ingelheim’s  Ofev (nintedanib) — or had…

Living with a life-threatening illness like idiopathic pulmonary fibrosis (IPF) evokes a plethora of feelings throughout the course of the disease. Some are positive. At times, a patient is content, grateful, or hopeful. Other times, the feelings are negative and a patient could experience anger, fear, guilt, or…

patientMpower, a U.K. digitial healthcare and advocacy company, joined others in voicing disappointment with the recent decision of a British advisory board to restrict the use of Esbriet (pirfenidone) to patients with moderate-to-severe idiopathic pulmonary fibrosis (IPF). NICE’s final recommendations for Esbriet (marketed by Genentech) and its…

Using supplemental oxygen is a mixed bag. It is wonderful because it gives us the oxygen we need to keep our body healthy and to stay alive. It is hard due to many reasons I shared in a previous column, including dealing with the tubing. I’ve discovered…

Pulmonary fibrosis patients have a new tool for learning about clinical trials of potential treatments. The Clinical Trial Finder is an online platform that the Pulmonary Fibrosis Foundation developed. It offers information on the more than 100 research opportunities listed on the National Institutes of Health’s ClinicalTrials.gov website. An overarching goal…