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More than 800 community members recently turned out for the inaugural Arrest and Extinguish ALS event in Lenox, Massachusetts, raising $50,000 for amyotrophic lateral sclerosis (ALS) research. Twenty-two first-responder teams from the state’s Berkshires region gathered at the music venue Tanglewood to participate in a fun tug-of-war event…

RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site was developed by the National Center for Advancing Translational Sciences (NCATS), a division of the National Institutes of…

Although people who develop amyotrophic lateral sclerosis (ALS) have altered levels of several blood metabolites — products of our cells’ metabolism — before disease onset, these changes do not enable reliable identification of who is at risk of having ALS, according to a large study. The research, “…

With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose rare diseases have already been diagnosed. That’s the warning from Christopher P. Austin, MD, director of the National Center for Advancing Translational Studies (NCATS) at…