News

The National Organization for Rare Disorders (NORD) is now accepting applications from patient advocacy organizations — ones focused on supporting people with a rare disease, such as Lambert-Eaton myasthenic syndrome (LEMS) — to implement two new patient registries on its IAMRARE platform. To amplify its set of…

A 62-year-old woman with a long history of smoking was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) after experiencing rare symptoms of the autoimmune disease — specifically, early respiratory failure and unresponsive pupils. These symptoms occurred following an in-hospital cardiac arrest, the clinicians noted in a case report. Initially treated for…

Lambert-Eaton myasthenic syndrome (LEMS) may be underdiagnosed in a sizeable fraction of people with small cell lung cancer (SCLC), a study analyzing real-world data suggests. Based on these findings, scientists argue that standardized protocols to screen people with SCLC for LEMS “may be warranted.” David Morrell, senior vice president…

People with one or more rare diseases, such as Lambert-Eaton myasthenic syndrome (LEMS), face a wide range of obstacles that call attention to the need for better support and resources, according to a survey of patients living in Québec, Canada. Such obstacles include diagnostic uncertainty, condescending attitudes from healthcare…

Using digital tools to measure changes in gait and other aspects of physical activity outside of a hospital setting is a promising avenue for research in rare neurological disorders like Lambert-Eaton myasthenic syndrome (LEMS) — but more research is needed to validate these tools for use in studies. That’s…

The U.K.-based myasthenia patient organization Myaware will host an online support meeting on Aug. 9 for individuals living with Lambert-Eaton myasthenic syndrome (LEMS). The 1.5-hour Zoom meeting is specifically for members of Myaware, the only nonprofit in the U.K. representing people with myasthenia, a group of neuromuscular…

People with a rare disease who do not adhere to their therapeutic regimen primarily do so intentionally, rather than due to forgetfulness, based on how they view their disease and treatment. That’s according to a recent report from Atlantis Health, a global group of companies that specializes in developing…

Months after a Federal Court of Appeal of Canada decision restored the availability of the Lambert-Eaton myasthenic syndrome (LEMS) treatment Ruzurgi (amifampridine) in that country, the therapy is now covered by most provincial and federal public health programs and by many private insurance plans through special authorization. Overall, coverage…

It can take as long as nine years for doctors to be able to detect a small cell lung cancer (SCLC) in people with Lambert-Eaton myasthenic syndrome (LEMS), as evidenced by a new case report from Italy. The report describes a man, 61, who was tested every six months…

Delaware’s lieutenant governor, Bethany Hall-Long, PhD, is applauding the passage in the state House of Representatives of a measure that would create the state’s first Rare Disease Advisory Council (RDAC). The legislation would establish an advisory body for state residents who have a rare disease, such as Lambert-Eaton myasthenic…