Mary Chapman,  features writer—

Quebec has added Radicava (edaravone),  Mitsubishi Tanabe Pharma’s treatment for amyotrophic lateral sclerosis (ALS), to its provincial medication plan. The addition means the intravenous infusion therapy is now listed on the formulary of the Regie de l’assurance maladie du Quebec, which administers public health…

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…

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…

A $25,000 Ionis Pharmaceuticals scholarship will help amyotrophic lateral sclerosis (ALS) patients in the San Diego, California, area participate in a host of integrative physical and mental wellness programs through Adapt Functional Movement Center. The full range of personalized sessions will be provided online during the COVID-19 pandemic. Designed…

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

The Medidata Institute and Project ALS have announced a research partnership aimed at better understanding amyotrophic lateral sclerosis (ALS) and developing new and personalized treatment approaches. With a focus on rare diseases, the institute works with scientists, regulatory agencies, patient advocates, life science companies, and research…

Aiforia Technologies and NeuroScience Associates (NSA Labs) are collaborating in an effort to learn more about how amyotrophic lateral sclerosis (ALS) affects brain function. The project leverages NSA Lab’s neuroscience expertise and Aiforia’s artificial intelligence (AI) know-how. It came about after the donation of the entire…

Biotech company EnClear Therapies has announced $10 million in financing to help advance its proprietary platform for stopping the progression of neurodegenerative disorders, including amyotrophic lateral sclerosis (ALS). The investments comes from a Series A financing round, which is part of an early development stage for start-up…

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

At the time of his stunning 2015 amyotrophic lateral sclerosis (ALS) diagnosis, Ed Rapp was a veteran Caterpillar executive who had worked and lived around the world. Since being diagnosed, Rapp has directed his efforts toward ALS advocacy. Those efforts will be recognized on Feb. 22, when he…