News

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

A student bioengineering team at Washington State University (WSU) has designed a mattress to help amyotrophic lateral sclerosis (ALS) patients and others with sleep or mobility issues rest better. The students — seniors Katie Lober, Jackson Rieb, and Sarah Schroeder — hope to patent their invention and also…

ALS Awareness Month has been observed each May since 1992. But this year, the COVID-19 pandemic has forced supporters to rethink ways to raise funds and awareness for amyotrophic lateral sclerosis (ALS). In previous years, May has been full of fundraising and educational activities such as outdoor bake…

Grant awards totaling $5 million will support six academic-industry projects into potential biomarkers and treatments for amyotrophic lateral sclerosis (ALS) and frontotemporal degeneration (FTD), Target ALS and the Association for Frontotemporal Degeneration (AFTD) announced. The two groups joined to support this collaborative work as ALS and…

Agriculture and other areas that expose people to pesticides, paint solvents, electromagnetic fields, and heavy metals may increase their odds of developing amyotrophic lateral sclerosis (ALS), a population-based study from Italy shows. But larger studies are needed to confirm these findings, its researchers wrote, as only some risk factors…

Computer scientists at Stony Brook University have been awarded $200,000 by the ALS Association to continue the development of a mobile app that helps people with amyotrophic lateral sclerosis (ALS), and others whose mobility has been impaired, to regain some of their independence. According to a…

Identifying blood biomarkers that reflect the metabolic changes occurring in people with amyotrophic lateral sclerosis (ALS) may be among the most promising approaches to diagnosing patients in the early stages of disease, sometimes years before motor symptoms appear, a review study suggests. The study, “Importance of the…

The ALS Association has committed $652,543 over the next three years to support efforts to improve the quality and efficiency of clinical trials for amyotrophic lateral sclerosis (ALS), and to promote the development of treatments and research partnerships. The efforts are a collaboration of the Northeast ALS Consortium (NEALS), the…

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…

A branch of the European Medicines Agency (EMA) has recommended that Amylyx‘s investigational oral compound AMX0035 be designated an orphan medicine to treat people with amyotrophic lateral sclerosis (ALS). Orphan designation is given to medicines in Europe with the potential to be safe…