The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…
Covid-19
The Phase 2b GALACTIC-1 trial testing Galecto’s candidate GB0139 as an inhalation therapy for idiopathic pulmonary fibrosis (IPF) has recruited more than 150 patients to date, remaining on track despite the current COVID-19 pandemic, the company announced. The study (NCT03832946), underway across centers in the U.S.,…
GB0139, Galecto’s lead compound to treat various fibrotic diseases of the lungs, has shown strong anti-fibrotic activity in a mouse model of idiopathic pulmonary fibrosis (IPF) and in IPF patients in a completed Phase 2a trial. A randomized, double-blind and placebo controlled Phase 2b trial (NCT03832946)…
Most of my friends and family members would say I am an open book about my chronic illness. After the initial shock wore off from being diagnosed with a life-threatening lung disease at 28, I decided to share my story through writing. Serena Lawrence, the late senior managing columns…
This past week, I felt things. Like, I really, finally felt things. They were real feelings, not forced, and came without judgment. It’s been longer than I want to admit since I have experienced any emotion without it being tainted by anxious judgment. I have written many columns…
Self-isolation has become a form of survival for those with pulmonary fibrosis during the COVID-19 pandemic. I am a single-lung transplant recipient and have a compromised immune system. COVID-19 can devastate a perfectly healthy person, and someone with my current state of health is at even greater risk. The self-isolation…
As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the outbreak — are particularly terrified of this pandemic. That fear is evident in an online survey conducted by the…
I can’t recall how many weeks we’ve been enduring physical distancing unless I actually sit down to think about it. The days seem to blur together, and the time at home seems similar today to what it was yesterday, and to the days before that. However, if this is…
While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in their homes, one may be a new appreciation of telemedicine. “If something good could come out of this crisis, it’s that…
Despite the COVID-19 outbreak, patient enrollment in the Phase 2 trial of setanaxib, an investigational oral treatment for idiopathic pulmonary fibrosis (IPF), is still expected to start by mid-year, Genkyotex, the therapy’s developer, announced in a press release. The single-site study (NCT03865927), whose protocol has been…
