Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

FFF Enterprises and Bionews announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and continue to manage their health during this time when many are finding themselves alone. Recognized as the nation’s leading supplier of…

The Muscular Dystrophy Association (MDA) is hosting a Facebook Live event on May 1 concerning precautions and best practices needed to protect the amyotrophic lateral sclerosis (ALS) community during the COVID-19 outbreak. The half-hour event, which kicks off ALS Awareness Month, is to begin at…

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…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

Since my husband has ALS and is paralyzed, his life is much the same under COVID-19 stay-at-home orders. Todd still spends his days on the computer, except now there are many more people online, so he feels more connected. However, the kids and I have had to find a…

A weak link only between a person’s current smoking study and greater risk of amyotrophic lateral sclerosis (ALS) was seen by scientists in a U.K. study, with no evidence that lifetime smoking exposure affects such risk. The researchers believe that this weak association is likely a “false-positive,” and there…

Injecting tiny particles carrying adapalene — an activator of the retinoic acid signaling pathway — to the brain and spinal cord of mice with amyotrophic lateral sclerosis (ALS) can prolong animals’ survival, improve their motor function, and prevent neurodegeneration, a study shows. The study, “…

Remember those “100 Things to Do During a Pandemic” emails that arrived in our inboxes a while back? Well, a few days ago, I came across one, and while reading it, I felt the symptoms of “compare-despair” welling up in my mind. Years ago, I might have followed the negativity…

A  way of examining multiple genes or the entire human genome at the same time, called next-generation sequencing (NGS), is a promising tool for diagnosing amyotrophic lateral sclerosis (ALS) in routine clinical practice, a review study suggests. This method’s approach is faster and less expensive than the standard…

Changes in the metabolism of a class of fat molecules called sphingolipids may be a cause of motor neuron diseases like amyotrophic lateral sclerosis (ALS), a study reports. Targeting these alterations may open new way of treating these conditions. Sphingolipids are a class of lipids (fats) with a…