News

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

Health Canada has approved the use of oral Firdapse (amifampridine) to treat people with Lambert-Eaton myasthenic syndrome (LEMS). Catalyst Pharmaceuticals‘ request for Firdapse’s approval in Canada was assigned priority review. The oral therapy (given in 10 mg tablets) is already available for…

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience.  Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with…

A post-exercise facilitation test, which measures muscle activity following voluntary muscle contraction or electrical stimulation, can help identify the effects of carpal tunnel syndrome (CTS) on nerves and muscles in people with Lambert-Eaton myasthenic syndrome (LEMS), a case report shows. The study, “Use of Post-Exercise…

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…

A new scoring tool can be used to effectively estimate the risk of developing small cell lung cancer (SCLC) for a person with Lambert-Eaton myasthenic syndrome (LEMS), according to a new study. Smoking, being age 50 or older, and significant weight loss within three months of LEMS onset all…

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…

People with Lambert-Eaton myasthenia syndrome (LEMS) have a specific response pattern to repetitive nerve stimulation — known as RNS — that may enable physicians to easily distinguish such cases from the neuromuscular condition myasthenia gravis (MG), a study reports. The study, “Lambert-Eaton myasthenia syndrome:…

A $1.95 million federal grant has been awarded to researchers investigating the underlying cause of autoimmune diseases, which include Lambert-Eaton myasthenic syndrome (LEMS). Autoimmune disorders, collectively characterized by immune system attack against the body’s own tissues, are the third most common disease type in humans (after cancer and…

The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis for a disease that few people — sometimes even physicians — have heard of is challenging on its own merit.