At a recent hospital appointment, I was asked to complete a survey about my experience. As a patient with a chronic illness, I am at the hospital a lot and am regularly asked to complete surveys. While they sometimes seem time-consuming and redundant, I know they are the hospital’s way…
“Did you wash your hands?” That’s a question I was very familiar with long before the COVID-19 pandemic. My mom, Diana, is an obsessive hand-washer. She is also obsessive about making sure everyone else does it. She’ll merely sense my dad’s craving for…
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons and…
Lung cancer is more likely in people with idiopathic pulmonary fibrosis (IPF) than the public at large, and these patients should be given regular chest scans for its presence, a study reports. Routine use of high-resolution computed tomography (HRCT) chest scans is particularly important because lung cancer lowers an…
Three Lakes Foundation and the Mayo Clinic have partnered to help people be more aware of pulmonary fibrosis (PF) symptoms, and to be diagnosed earlier in the disease process should they have them. The venture’s ultimate goal is a way of making a remote diagnosis possible, so…
I thrive in an organized and structured environment. As a young adult, I guess I’m a creature of habit and predictability, but my parents say I’ve always been this way. Last April, I wrote a column about the importance of routine and how the pandemic has disrupted our normal…
A researcher at the Fred Hutchinson Cancer Research Center received the first $50,000 award of a new funding program jointly developed by the center and the Washington Research Foundation (WRF) to support the development of a new screening method to identify emerging therapies for idiopathic pulmonary fibrosis (IPF).
While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…
The European Idiopathic Pulmonary Fibrosis (IPF) and Related Disorders Federation (EU-IPFF) is welcoming patients, clinicians, researchers, industry representatives, and policymakers to register for a three-day virtual summit  regarding pulmonary fibrosis (PF) and other interstitial lung diseases (ILDs). The European PF Patient Summit, which will be held online April…
People with idiopathic pulmonary fibrosis (IPF) in poorer health are less likely than healthier patients to tolerate more than one year of treatment with Ofev (nintedanib), and benefit less from the therapy than those able to continue with its use, a small real-world study reports. Side effects that…
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