News

Acetaminophen may compromise safety, efficacy of Firdapse: Study

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, “…

New Maryland council to help guide legislature on rare diseases

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…

NORD adds 9 new rare disease centers to its US network

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…

Twins outfielder is stepping up to the plate for LEMS, rare diseases

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…

NORD to offer ‘Latino/a/x Listening Sessions’ in US on rare disease

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…