Marisa Wexler, MS,  senior science writer—

For the more than 25 million Americans living with rare diseases, including Lambert-Eaton myasthenic syndrome (LEMS), medical emergencies can pose unique challenges: because these disorders are by definition rare, first responders or emergency personnel may not be aware of a person’s condition, or familiar with the appropriate treatment.

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases. “The RareLaunch program is central to NORD’s mission and history — community…

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…

A $750,000 grant from the National Science Foundation will fund a project to build a better computer model of the communication between nerves and muscle cells. The project may have applications for Lambert-Eaton myasthenic syndrome (LEMS), a condition in which the immune system disrupts nerve-muscle communication. Nerve…

An $86,880 grant from the National Science Foundation will support the development of computer simulations that aim to improve scientists’ understanding of the neuromuscular junction (NMJ) — the site where nerve cells connect with muscles. The results may help researchers find treatments for Lambert-Eaton myasthenic syndrome (LEMS)…

Health Canada has approved Ruzurgi (amifampridine) for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in individuals ages 6 or older. In Canada, the oral medication will be commercialized by Médunik Canada, per an agreement with Jacobus Pharmaceuticals, the original developer of Ruzurgi.  “We are proud…

Autoantibodies against a protein called GRP78 may lead to paraneoplastic cerebellar degeneration (PCD) in people with Lambert-Eaton myasthenic syndrome (LEMS), a study suggests. The study, “GRP78 antibodies are associated with blood-brain barrier breakdown in paraneoplastic cerebellar degeneration in Lambert‐Eaton myasthenic syndrome,” was published in the…

A case of Lambert-Eaton myasthenic syndrome (LEMS) that occurred secondary to lung cancer highlights the need for comprehensive antibody testing when doctors suspect that the immune system might be attacking the nervous system. The case was described in Thoracic Cancer, in the paper, “Anti-SOX1 antibody-positive paraneoplastic neurological syndrome…

A recent case report of a man diagnosed with simultaneous Lambert-Eaton myasthenic syndrome (LEMS) and limbic encephalitis (LE) highlights the need for thorough screening of patients, especially those with unusual symptoms. The case report, titled “Paraneoplastic Lambert–Eaton Myasthenic Syndrome With Limbic Encephalitis: Clinical Correlation With the Coexistence of…