Marisa Wexler, MS,  senior science writer—

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…

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…

Legislators in Maryland have officially established a Rare Disease Advisory Council (RDAC) in the state. The new council will bring together stakeholders from the community of people with rare diseases such as Lambert-Eaton myasthenic syndrome (LEMS), including patients, caregivers, scientists, and healthcare providers. The council will serve to educate…

For a woman with cancer complicated by Lambert-Eaton myasthenic syndrome (LEMS), treating the cancer with an immune checkpoint inhibitor did not worsen her LEMS, according to a report. Her case suggests that, at least in some instances, immune checkpoint inhibitors may be a treatment option for cancer patients who…

The online platform Patient Voice has opened a campaign, running throughout March, to spotlight the stories of people in Canada with rare diseases like Lambert-Eaton myasthenic syndrome (LEMS). This year’s effort under the Canada’s Rare Voices campaign, Patient Voice aims to share stories from patients, caregivers, and clinicians…

In 2023, Catalyst Pharmaceuticals will be working to expand the availability of its Lambert-Eaton myasthenic syndrome (LEMS) treatment Firdapse (amifampridine) to Asian countries. The company will first focus its efforts in Japan, where its partner DyDo Pharma is now conducting a Phase 3 clinical trial…

Teva Pharmaceuticals is seeking authorization from federal regulators in the U.S. to produce and sell a generic version of Firdapse (amifampridine), an approved treatment for Lambert-Eaton myasthenic syndrome (LEMS). Firdapse, marketed by Catalyst Pharmaceuticals, was approved by the U.S. Food and Drug Administration in 2018 as the…

Among those with Lambert-Eaton myasthenic syndrome (LEMS) and other forms of paraneoplastic neurological syndrome, younger patients often experience a longer delay between symptom onset and seeking medical attention — a delay that can result in worse clinical outcomes, a new study indicates. “Patients aged [65 years or younger]…