News

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…

The U.S. Patent and Trademark Office has issued a new patent to Catalyst Pharmaceuticals covering the company’s rights to Firdapse (amifampridine), a treatment for Lambert-Eaton myasthenic syndrome (LEMS). The patent (No. 10,793,893), “Methods of administering 3,4-diaminopyridine,” expires on April 7, 2034. Catalyst’s rights over Firdapse…

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)…

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…

When monitoring Lambert-Eaton myasthenic syndrome (LEMS) patients, physicians should wait at least 150 seconds between nerve stimulation tests to avoid interference from prior exercise or electric stimulation in subsequent muscle responses, a recent study found. The study, “Assessment of the CMAP Amplitude Return Time…

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme “A Glimmer of Hope,” the competition is a means to “visually express the hope that exists for people affected by…

Catalyst Pharmaceuticals and KYE Pharmaceuticals have reached an exclusive agreement that will enable KYE to commercialize Firdapse (amifampridine), Catalyst’s oral therapy for adults with Lambert-Eaton myasthenic syndrome (LEMS), in Canada. The announcement comes after the medication was approved by Health Canada earlier this month.