Mary Chapman,  features writer—

Note: This story has been updated March 6, 2025, to correct a quote from Mindy Henderson, MDA vice president of disability outreach and empowerment. The Muscular Dystrophy Association (MDA) is once again hosting its annual gathering, the MDA Clinical & Scientific Conference. The 2025 event will take place…

The inaugural Lambert-Eaton myasthenic syndrome (LEMS) Awareness Day — which will be held each year on March 30 to call attention to the rare autoimmune disorder — was “fantastic,” according to the nonprofit association that created the event. “We appreciate everything everyone did for this first LEMS Awareness Day,…

The U.S. Patent and Trademark Office has sent a notice of allowance for two additional patents for Firdapse (amifampridine), Catalyst Pharmaceuticals’ approved therapy for Lambert-Eaton myasthenic syndrome (LEMS), for claims related to its bioavailability under fasting and fed dosing conditions. Catalyst, which has licensing rights in North…

When United Nations (UN) member states gathered recently to discuss advancing universal health coverage by 2030, a side event was also held that focused on universal coverage for people with rare disorders. The event, titled “A Blueprint for Leaving No One Behind,” was held in New York by…

The U.K.-based myasthenia patient organization Myaware will host an online support meeting on Aug. 9 for individuals living with Lambert-Eaton myasthenic syndrome (LEMS). The 1.5-hour Zoom meeting is specifically for members of Myaware, the only nonprofit in the U.K. representing people with myasthenia, a group of neuromuscular…

People with a rare disease who do not adhere to their therapeutic regimen primarily do so intentionally, rather than due to forgetfulness, based on how they view their disease and treatment. That’s according to a recent report from Atlantis Health, a global group of companies that specializes in developing…

Months after a Federal Court of Appeal of Canada decision restored the availability of the Lambert-Eaton myasthenic syndrome (LEMS) treatment Ruzurgi (amifampridine) in that country, the therapy is now covered by most provincial and federal public health programs and by many private insurance plans through special authorization. Overall, coverage…

Delaware’s lieutenant governor, Bethany Hall-Long, PhD, is applauding the passage in the state House of Representatives of a measure that would create the state’s first Rare Disease Advisory Council (RDAC). The legislation would establish an advisory body for state residents who have a rare disease, such as Lambert-Eaton myasthenic…

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) 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…