Rare Disease Day Panel Opens Window to Patient Experience

Rare Disease Day Panel Opens Window to Patient Experience

Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…

Identifying and Avoiding False Health Claims

Internet scams are widespread and can infiltrate every aspect of our digital presence. The prevalence of online dating scams, for instance, was recently highlighted in the trending Netflix documentary “The Tinder Swindler.” Scams have become particularly rampant in rare disease communities, and are spreading rapidly via social media platforms,…

Haduvio Succeeds at Easing Chronic Cough of IPF in Phase 2 CANAL Trial

The investigational oral therapy Haduvio (nalbuphine extended-release tablets) significantly reduced chronic cough in people with idiopathic pulmonary fibrosis (IPF), according to interim results from the proof-of-concept Phase 2 CANAL trial. Findings in 26 patients showed a mean 51.7% placebo-adjusted decline in daytime cough frequency with the treatment, meeting the…

FDA Gives Breakthrough Therapy Status to Oral BI-1015550 for IPF

The U.S. Food and Drug Administration (FDA) has given breakthrough status to Boehringer Ingelheim’s BI-1015550, an experimental oral therapy for idiopathic pulmonary fibrosis (IPF), based partly on the findings of a clinical trial in IPF patients. A breakthrough therapy designation works to speed the development and review of…

Viral and Bacterial Infections With IPF Greatly Raise Risk of Death

Joint infection with a virus and bacteria in people with idiopathic pulmonary fibrosis (IPF) significantly raises their risk of dying — by more than eight times — relative to patients with no such infections, a study reported. Viral plus bacterial infections were linked to acute exacerbations and disease progression in…

An IPF Patient Perspective on What It Means to Be Rare

For most of my adult life I was blissfully unaware of rare diseases. This lasted until 2016, when I was diagnosed with idiopathic pulmonary fibrosis (IPF), a life-threatening and progressive lung disease that affects about 200,000 Americans, with 50,000 new cases diagnosed annually in the U.S. Like many others,…

Q&A With RARE-X Disease Data Platform Founder, Nicole Boice

The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…