Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for Rare Disorders (NORD) Summit, brings the rare disease community together to network and discuss developments in treatments and research…
NORD Rare Disease Summit, Online Oct. 18-19, Open for Registration
Interstitial lung diseases (ILDs), particularly idiopathic pulmonary fibrosis (IPF), are associated with a substantial economic burden to healthcare systems due to the high cost of their treatments, a German study reported. Medication costs for IPF patients, recruited between November 2016 and April 2017 and followed for one year, rose from…
As a research sociologist, my goal is to research anything and everything I need answers to. I often become so preoccupied with this search that it becomes an obsession. Many people turn to online research for answers about health issues, and I am no different. When it comes…
The Three Lakes Foundation is joining with the Lung Foundation Australia, the Centre of Research Excellence in Pulmonary Fibrosis (CRE-PF), and an Australian philanthropist to create a global network for pulmonary fibrosis (PF) research. Together, they aim to raise disease awareness, and the resources and knowledge…
A molecule thought to be a natural antioxidant, pterostilbene (PTE) prevented signs of idiopathic pulmonary fibrosis (IPF) from occurring in a cell model of the disorder by regulating a protein called ASIC2, a study reported. This finding suggests that PTE and other compounds targeting the ASIC2 protein may have…
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…
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…
Controversial conversations are never easy to navigate, regardless of age or experience, especially when engaging with people you love. Since the start of the pandemic, the number of controversial conversations has increased, and the reactions to conflicting opinions have intensified. Social media disputes are often crass, cruel, and filled…
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…
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,”…
