The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to patients with compromised immune systems or those participating in gene therapy studies. That was the message of a recent…
It happens far too often in the pulmonary fibrosis (PF) community: the unexpected and sudden loss of a fellow patient. I’ve lost some dear friends since my idiopathic pulmonary fibrosis (IPF) diagnosis nearly five years ago, and it never gets easier. Last week, the sudden loss of Don Prager, known…
Care-cation: an extended stay in a place away from home to care for a loved one in need. In the middle of the coronavirus pandemic, we had a week or so to find a six-week-long rental in San Francisco that could house my mom, Diana, who…
Calprotectin may serve as a blood biomarker for disease severity in patients with idiopathic pulmonary fibrosis (IPF), a new study indicates. Calprotectin blood levels are significantly higher in IPF patients and show a correlation with measures of lung function. The study, “Serum calprotectin as new biomarker for disease…
A set of rare, disease-causing variants in genes that help control both the body’s immune response and cell adhesion — the process by which cells form connections with other cells or their environment — were found to be more common in China in patients with idiopathic pulmonary fibrosis (IPF)…
At-home evaluation of lung function using a spirometry device is a “feasible and valid measure” for people with idiopathic pulmonary fibrosis (IPF) who have preserved lung function, clinical trial data show. However, further study is needed to evaluate the utility of at-home evaluations, since correlations between changes seen at…
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…
Owlstone Medical has launched a new breath biomarker panel test — a “breathalyzer for disease” — to distinguish different chronic inflammatory lung diseases, including idiopathic pulmonary fibrosis (IPF), asthma, and chronic obstructive pulmonary disease (COPD). The new panel test was designed to support research seeking ways to distinguish…
While I don’t have a medical background or degree, I have learned a lot in the past few years about idiopathic pulmonary fibrosis (IPF). Much of that learning comes from other patients, either via the Pulmonary Fibrosis News Forums or in conversations at events and virtual support groups. Since…
Immune cells called macrophages can stimulate nerve-associated lung scarring (fibrosis) in pulmonary fibrosis (PF), a study reports. Its findings suggest that antagonists (or inhibitors) of alpha-1 adrenergic nerve receptors may be a potential avenue for PF treatment. The study, “Macrophage-derived netrin-1 drives adrenergic nerve–associated lung fibrosis,”…
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