Rare Disease Day takes place on Feb. 29. Bionews Services, the parent company of this website, has taken on this initiative in an all-out effort to bring awareness to rare diseases, of which over 6,000 have been identified. I often ask myself, “What will you do to bring…
Am I Doing Enough to Bring Awareness to My Rare Diseases?
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those  looking to begin the complex process in its Feb. 20 webinar. William Whitman…
I believe we all have an innate desire to feel connected with one another. It doesn’t matter whether that connection is when we’re empathizing with another patient plagued by the same disease, or when the anguish we experience matches that of a patient who is also a friend. One of…
Although 50,000 new cases of pulmonary fibrosis (PF) are diagnosed each year, a national survey found that 86 percent of U.S. residents are unfamiliar with the disease’s symptoms. The online National Awareness Survey from the Pulmonary Fibrosis Foundation (PFF), was completed by 2,013 U.S. adults, and…
Researchers at the University of Pittsburgh and the University of Delaware received funding for their research into innovative therapies for specific disease areas, including pulmonary fibrosis (PF). CSL Behring and the University City Science Center awarded $250,000 each to Cecelia Yates, PhD, from the University…
As I write this, I have been living with a rare disease for 1,413 days. On April 7, 2016, my life was transformed from an active young adult to a chronically ill patient when I was diagnosed with idiopathic pulmonary fibrosis (IPF). I remember how naive I was about…
Hepion Pharmaceuticals‘ CRV431 lowers the production of fibrosis-associated proteins in a variety of cell types, including lung cells, new data from the company show. CRV431 is a small molecule being developed as an investigational treatment for non-alcoholic steatohepatitis (NASH) and viral hepatitis-induced liver disease. Both of these conditions are…
Use of INOpulse — inhaled nitric oxide — lessened pulmonary arterial pressure, and the resistance to blood flow in arteries that supply blood to the lungs, in people with pulmonary hypertension (PH) associated with pulmonary fibrosis (PH-PF), top-line results from a Phase 2 trial show. These results add to…
Much of my young adult life was molded by my fears. I have talked about the effects in past columns, and how my mom’s hospitalization helped me find my courage. After surviving months in the ICU, a double-lung transplant, and a rocky start to her recovery, my mom is…
An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…
