News

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…

Proposed policy changes that would let Medicare set prices for therapies earlier could result in fewer new medicines being approved over the next decade and rare diseases like Lambert-Eaton myasthenic syndrome (LEMS) may be among the most affected. That’s according to an analysis from Vital Transformation, whose clients…

Most adults in the general public in Japan support using public funds to help cover the costs of treatment for people with rare diseases, according to a recent study. The study, “General public’s understanding of rare diseases and their opinions on medical resource allocation in Japan: a…

The National Organization for Rare Disorders (NORD) is applauding the recent deal to raise the debt ceiling in the U.S., which would protect access to insurance for people with rare diseases like Lambert-Eaton myasthenic syndrome (LEMS). However, NORD has raised concerns that the debt ceiling bill (HR…