NORD Rare Disease Summit, Online Oct. 18-19, Open for Registration

NORD Rare Disease Summit, Online Oct. 18-19, Open for Registration

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…

Partners to Open Global Network Supporting PF Research

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…

Natural Plant Antioxidant Protects Cells From Processes of IPF

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…

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,”…

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