3 ways I plan to raise awareness on Rare Disease Day

As Rare Disease Day approaches on Feb. 28, I’m trying to narrow the focus of my advocacy efforts. I never imagined I’d become an advocate and grow to love so many people living with rare diseases. But that all changed in April 2016, when I was diagnosed with idiopathic…

In the 1939 Frank Capra film “Mr. Smith Goes to Washington,” a naive young man played by Jimmy Stewart is appointed to fill a vacant seat in the U.S. Senate. He was determined to make a difference and perhaps change the world. Faced with the challenges of the political arena,…

The California Institute for Regenerative Medicine (CIRM) has awarded Rubedo Life Sciences $1.45 million to develop and study a potentially disease-modifying treatment for idiopathic pulmonary fibrosis (IPF) that targets senescent lung stem cells. The funding will enable the biopharmaceutical company to characterize senescent cells —…

The first patient has been dosed in a Phase 2 clinical trial of bersiporocin, Daewoong Pharmaceutical’s treatment candidate for idiopathic pulmonary fibrosis (IPF). Full patient dosing and initial data from the study are anticipated by 2024, according to Daewoong. “Daewoong Pharmaceutical has set the significant first step to the…

As a young adult, I feel competent in many aspects of my life. In my career, I’m a new clinical manager in the field of psychotherapy, and I feel grateful that things are going well. Personally, I can carry out the tasks of living independently fairly well. I care for my…

Having a rare disease results in many complex problems, some of which can be debilitating. This has been my experience over the past six months as I’ve struggled with pulmonary fibrosis (PF) and heart issues due to atrial fibrillation with rapid ventricular response. While managing my health…

“It was July 9, 2021, at 9 a.m. NBC’s ‘Today’ show was on television in our house that morning. I was in my home office going through my morning routine while my wife, Susan, was downstairs in her home office. “When my cellphone rang, I recognized the number as the…

CS Pharmaceuticals (CSP) has entered into an exclusive in-licensing agreement with Daewoong Pharmaceutical to develop and commercialize bersiporocin, an oral experimental anti-fibrotic medication for idiopathic pulmonary fibrosis (IPF) and other respiratory diseases in the greater China region. “This will be the stepping stone towards becoming a game…

Whenever my family visits my husband and me here in Hawaii, I can’t help but reflect on my first trip to the islands right before my mom, Holly, was hospitalized for an acute exacerbation of her idiopathic pulmonary fibrosis (IPF). That 2018 visit was our first real family vacation…

The U.S. Food and Drug Administration (FDA) has granted INS018_055 orphan drug designation for the treatment of idiopathic pulmonary fibrosis (IPF), the therapy’s developer Insilico Medicine, announced. Insilico is expecting to initiate a global Phase 2 clinical trial testing INS018_055 in people with IPF later this year. Orphan drug…