News

Many Wait a Year or Longer for PF Diagnosis, Survey Finds

For more than 40% of people with pulmonary fibrosis (PF), obtaining an accurate diagnosis takes a year or longer, according to a European survey. As noted by the international team of researchers who conducted the study, survey findings highlighted “a major need for more information and support during and…

Advocates Lobby US Congress During Virtual Rare Disease Week

More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…

Ofev or Esbriet Can Help Stabilize Lung Function in Advanced IPF

Decline in lung function is slower in people with advanced idiopathic pulmonary fibrosis (IPF) who start treatment with Ofev (nintedanib) or Esbriet (pirfenidone), although their risk of death remains considerably greater than those with mild to moderate disease, a study based on patient data reported. Data from patient…

Blood Levels of Molecules May Distinguish IPF From Other ILDs

Measuring the levels of certain molecules in the blood could be useful for distinguishing idiopathic pulmonary fibrosis (IPF) from other types of lung disease, according to a recent study. The study, “Serum Biomarkers in Differential Diagnosis of Idiopathic Pulmonary Fibrosis and Connective Tissue Disease-Associated Interstitial Lung Disease,”…

Metabolic Enzyme Shows Potential as IPF Therapy in Early Study

Blocking the activity of a metabolic enzyme called succinate dehydrogenase (SDH) promoted the death of myofibroblasts — the main drivers of pulmonary fibrosis (PF) — and helped to heal persistent lung scarring (fibrosis) in a rat model, a study reported. These benefits were associated with a rescue of the metabolic abnormalities…

Umbilical Cord Stem Cells Help Limit Inflammation in Mice

Stem cells found in human umbilical cords limited lung damage associated with pulmonary fibrosis (PF) by reducing an excessive inflammatory immune response, a recent study of mice has found. Understanding how these stem cells interact with the immune system could improve future PF cell therapies, the researchers noted. The…

US Patient Groups Give Thumbs-Up to Rule Against Surprise Billing

The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…

Switching Between Antifibrotics May Help IPF Patients Live Longer

Switching antifibrotic treatment is generally well-tolerated among people with idiopathic pulmonary fibrosis (IPF), and those who did generally lived several years longer than those who did not, a study from Japan reports. Findings suggest that switching from one antifibrotic to another “is feasible and may improve prognosis [disease course]…

PF Diagnosis, Care in UK Also Fell to COVID-19 Pandemic

More than 100,000 fewer hospital appointments were logged by people with lung diseases like idiopathic pulmonary fibrosis (IPF) in England between March 2020 and 2021, relative to the average annual number of such appointments — which the Taskforce for Lung Health attributed to the COVID-19 pandemic and the strain…

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