Reviva’s Investigational Therapy RP5063 Receives FDA Orphan Drug Status for IPF Treatment

Coping with Diagnosis Anniversaries

April 7, 2016, is a date that will be etched in my memory for a very long time. It is the date of my idiopathic pulmonary fibrosis (IPF) diagnosis, which followed nine long months of fatigue, shortness of breath, and a dry cough that never seemed to subside.

NIH Agency Pioneers Collaborative Research into Rare Diseases

A little-known government entity within the National Institutes of Health (NIH) is helping to lead U.S. efforts to speed up the development of therapies for some 7,000 rare diseases. The Office of Rare Diseases Research (ORDR), headquartered in Bethesda, Maryland, was established in 1993 within the NIH Office of the…

Be Kind to Yourself Throughout Hardships

All pulmonary fibrosis (PF) patients go through hardships. We watch our lungs and health decline and we suffer emotional pain as we process our foreshortened lives. Grief becomes a companion as we emotionally process all we endure. This disease takes a toll on us. Talk to yourself with…

Infant Lung Disease Shares Tissue-repair Signaling Problem with IPF, Study Finds

A lung-scarring disease that affects preterm infants has a tissue repair signaling problem seen in idiopathic pulmonary fibrosis, Vanderbilt University researchers report. The discovery increases scientists’ understanding of the mechanisms underlying bronchopulmonary dysplasia and IPF. It also raises the possibility of treating both disorders by targeting the signaling dysfunction. Researchers published…

How I Respond to Common Reactions About My Disease

Because I was diagnosed with a chronic illness at 28 years old, I have received many different reactions to the news. Most people are well-intentioned, some don’t know what to say, and others share common reactions that one might expect when something unfortunate happens. I experienced a lot…

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