The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…

Taking part in one Olympic event is an extreme accomplishment — but a U.K. couple are engaged in their version of 96 Olympic events, from synchronized swimming and skateboarding to cycling and wrestling, all in an effort to raise £30,000 (about $41,620) to support the Motor Neurone Disease Association…

Thanks to a new partnership, every amyotrophic lateral sclerosis (ALS) patient in New Jersey, about 400 in total, will have free access to eye gaze technology that can aid them in communicating. As the name suggests, this assistive technology helps people with neurodegenerative diseases, such as ALS, to communicate…

A £500,000 (almost $700,000) grant the My Name’5 Doddie Foundation was given to the LifeArc & MND Association Translational Research Fund to support work that might lead to new treatments for motor neuron diseases (MND), including amyotrophic lateral sclerosis (ALS). The fund, jointly established by LifeArc…

Amylyx Pharmaceuticals has raised $135 million to advance the clinical development and the potential launch of its lead candidate AMX0035 for the treatment of amyotrophic lateral sclerosis (ALS). The Series C financing round, led by Viking Global Investors, also will be used to support further research and…