News

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.

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…

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…

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

Health Canada has approved the use of oral Firdapse (amifampridine) to treat people with Lambert-Eaton myasthenic syndrome (LEMS). Catalyst Pharmaceuticals‘ request for Firdapse’s approval in Canada was assigned priority review. The oral therapy (given in 10 mg tablets) is already available for…

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience.  Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with…

A post-exercise facilitation test, which measures muscle activity following voluntary muscle contraction or electrical stimulation, can help identify the effects of carpal tunnel syndrome (CTS) on nerves and muscles in people with Lambert-Eaton myasthenic syndrome (LEMS), a case report shows. The study, “Use of Post-Exercise…

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…