News

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…

People with Lambert-Eaton myasthenic syndrome (LEMS) should be cautious when taking Firdapse (amifampridine) together with acetaminophen, a common over-the-counter pain killer and fever reducer, to avoid unwanted interactions that could compromise how safe Firdapse is and how well it works, a study in rats suggests. The study, “…

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…

Catalyst Pharmaceuticals is on track to submit an application requesting an increase to the maximum recommended daily dose of Firdapse (amifampridine) — its approved treatment for Lambert-Eaton myasthenic syndrome (LEMS) — from 80 to 100 mg. Currently, the maximum daily dosage of Firdapse is 80 mg for…

The National Organization for Rare Disorders (NORD) has selected nine new Rare Disease Centers of Excellence, bringing to 40 the total number of medical centers that are part of its network. This unique network of medical centers, clinics, and institutes seeks to expand access to multi-specialty care for…

A 40-year-old man who developed Lambert-Eaton myasthenic syndrome (LEMS) secondary to a cancer of the lymphatic system saw his LEMS symptoms ease only after he received comprehensive treatment involving several medical specialties, according to a case report. The patient, who had a type of B-cell lymphoma, developed weakness…

A sponsorship deal that grants Chiesi Global Rare Diseases access to BioInnovation Labs (BioLabs)’ network of life sciences coworking facilities in the U.S. is expected to help empower rare disease science and innovation. Under the sponsorship, Chiesi will be able to provide office hours, workshops, or other events…

Minnesota Twins outfielder Michael A. Taylor is stepping up to the plate on behalf of people with rare diseases like Lambert-Eaton myasthenic syndrome (LEMS). The home run challenge, which seeks to raise more than $150,000 for the rare disease community, will support the nonprofit organization Uplifting Athletes, which…

The National Organization for Rare Disorders (NORD) is hosting community listening sessions for Latino and Spanish-speaking people in the U.S. living with rare diseases, such as Lambert-Eaton myasthenic syndrome (LEMS). The series of in-person and virtual meetings — called “Latino/a/x & Hispanohablantes Community Listening Sessions” — will be…

The National Organization for Rare Disorders (NORD) has selected four patient advocacy organizations to join its IAMRARE platform and host patient registries for rare disorders. The goal is to enhance the platform’s volume of patient-reported data, which could result in new therapies and improved care for those with rare…