Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…
What a rough three weeks my family has been having. I’ve had to put a hold on writing my column because of events outside of my control. Once again, I am angry with this rare illness of mine. It not only puts a hold on my life, but…
Dictionaries play many roles in our lives. In early childhood, we use a dictionary to associate pictures with words. In early education, we learn to use a dictionary to define unfamiliar words and look for alternative meanings. In the computer age, we create spreadsheets with data dictionaries. Dictionaries fill in…
The China National Intellectual Property Administration has granted AdAlta a patent covering AD-214, the biotech company’s experimental therapy for idiopathic pulmonary fibrosis (IPF). The patent — number CN 107427574 B — entitled “CXCR4 binding molecules,” will expire in early January 2036. “China is now the second largest (and…
Dosing has begun in healthy volunteers in a Phase 1 clinical trial of ISM001-055, a small molecule potential treatment of idiopathic pulmonary fibrosis (IPF) developed using an artificial intelligence (AI) platform, Insilico Medicine announced. Up to 80 adults in this study (NCT05154240), currently enrolling at its one…
Nearly half of the people with pulmonary fibrosis (PF) responding to a survey were dissatisfied with their quality of life, while more than a third felt pessimist about their future. The U.S.-based survey was conducted by Pulmonary Fibrosis News. Nevertheless, most respondents said they were satisfied with their health…
Given the various unfortunate events happening around the world, including the evolving war between Russia and Ukraine, I’ve been reflecting on the many ways my family and I are blessed. At times, I’ve been guilty of not realizing my privilege. I’ve always had the basic necessities, including a roof…
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…
Pliant Therapeutics will start testing, in trial, a higher dose of its investigational oral small molecule PLN-74809, an anti-fibrotic therapy for idiopathic pulmonary fibrosis (IPF). The higher dose of 320 mg will be given to about 28 adults with IPF once daily for at least six months as…
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,…
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