Mary Chapman, features writer —

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…

Kevin Schaefer hadn’t been in an airport since he was 4 years old, so he had been looking forward to flying from his home in Cary, North Carolina, to Anaheim, California, in June for the 2019 Cure SMA Conference. As it turned out, his experience didn’t go as expected.

A $1 million gift from the Manouk Djoukhadjian Family Foundation II will create Quebec’s first philanthropic research chair on amyotrophic lateral sclerosis (ALS). The donation to the Armand-Frappier Foundation will establish the Anna Sforza Djoukhadjian Philanthropic Research Chair to advance ALS research at the Institut national…

To help accelerate development of effective treatments for amyotrophic lateral sclerosis (ALS), the ALS Association is investing $3 million in the disease’s first platform trial. The award is $1 million annually for three years to support the platform investigation, a type of clinical study that evaluates the…

The founder of the END ALS Association, Masahiro “Hiro” Fujita, can no longer move and can barely communicate because of amyotrophic lateral sclerosis (ALS). To help him enjoy the holidays and to raise disease awareness, his organization launched the Merry & Bright — EEG Illumination project. The effort…