News

Ruzurgi for Children and Adults With LEMS Returning to Canada

A decision by the Federal Court of Appeal of Canada is restoring the availability of Ruzurgi (amifampridine) to treat children and adults with Lambert-Eaton Myasthenic Syndrome (LEMS) in that country, Medunik Canada announced. Specifically, the court returned for a second time the notice of compliance, or approval, …

Teva Seeking FDA OK to Make Generic Version of Firdapse for LEMS

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…

NORD Applauds New US Legislation for Rare Disease Funding

While unhappy with shortcomings in the legislation, the National Organization for Rare Disorders (NORD) nonetheless is applauding a year-end U.S. spending package that included several programs and reforms crucial to those with rare diseases, including Lambert-Eaton myasthenic syndrome (LEMS). As part of an expansive $1.7 trillion package, signed…

Younger Patients Found More Likely to Delay Seeking Medical Attention

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]…

NORD Hopes to Add 4 Patient Registries to IAMRARE Platform

The National Organization for Rare Disorders (NORD) is requesting applications from patient advocacy organizations to host new or existing patient registries for rare disorders, such as Lambert-Eaton myasthenic syndrome, on its IAMRARE platform. To expand its collection of patient-reported data, which could lead to new treatments and…

Cancer Immunotherapy Tecentriq Tied to Higher LEMS Risk in Study

People with small cell lung cancer (SCLC) treated with the immune-based cancer therapy atezolizumab are at an increased risk of developing Lambert-Eaton myasthenic syndrome (LEMS), according to a database analysis of adverse events. The analysis was detailed in a study, “Increased risk of Lambert-Eaton myasthenic syndrome (LEMS)…

NORD, Others Urge Congress to Fully Fund FDA Rare Disease Programs

The National Organization for Rare Disorders (NORD) is leading an effort by organizations representing or treating people with rare diseases, all calling on federal lawmakers to include key U.S. Food and Drug Administration (FDA) programs and reforms in a year-end spending bill. A letter written by NORD and signed by 126…