FFF Enterprises and Bionews announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and continue to manage their health during this time when many are finding themselves alone. Recognized as the nation’s leading supplier of…
Covid-19
Now more than ever, healthcare workers and hospital employees are being applauded for their work. Even in the best of times, working in healthcare is not easy. These days, our healthcare systems are stressed because of COVID-19, and medical care looks vastly different than what we are used…
As I sit down to write this column, my heart feels heavy. As a Canadian, I can’t help but shed tears for the senseless act of violence that occurred over the weekend a few provinces to the east of me in Nova Scotia. A seemingly respectable man in a…
The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…
It’s fair to say that none of us really know how to navigate our days during this COVID-19 pandemic. I have never lived through anything quite like this, and would guess that many of you haven’t either. The days are long with a lack of routine and structure, and…
When I was growing up, my mom used to say, “Charlene, there is something to be said about routine!” Usually she was referring to my sleeping habits: I would stay up far too late and then be tired the next day. She always told me that if I got into…
COVID-19 has been reported to cause lung fibrosis in some people, but the type of fibrosis that develops is distinct from what generally occurs in those with interstitial lung disease (ILD), according to a press release issued by the Pulmonary Fibrosis Foundation (PFF). COVID-19 (coronavirus disease 2019)…
The Centers for Medicare and Medicaid Services (CMS) has waived all requirements for in-person testing and signature at delivery for supplemental oxygen during the COVID-19 pandemic. The Pulmonary Fibrosis Foundation (PFF) is urging patients, healthcare providers, and oxygen suppliers to comply with the new CMS guidelines,…
People with pulmonary fibrosis (PF) and other chronic lung disorders should strictly limit social contact during the global spread of the respiratory illness COVID-19, a pulmonary expert said. Rahat Hussain, MD, a pulmonologist and assistant professor of internal medicine at the University of Texas (UT) Health Science Center…
The news of organ transplants being paused at several medical centers around the world amid the COVID-19 pandemic is deeply troubling. As a patient living with idiopathic pulmonary fibrosis (IPF), I’m concerned, because ultimately, a lung transplant will be the only thing to save my life. I also…
