Mary Chapman, features writer —

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…

A decision by the Federal Court of Appeal of Canada is restoring the availability of Ruzurgi (amifampridine) to treat children and adults with Lambert-Eaton Myasthenic Syndrome (LEMS) in that country, Medunik Canada announced. Specifically, the court returned for a second time the notice of compliance, or approval, …

While unhappy with shortcomings in the legislation, the National Organization for Rare Disorders (NORD) nonetheless is applauding a year-end U.S. spending package that included several programs and reforms crucial to those with rare diseases, including Lambert-Eaton myasthenic syndrome (LEMS). As part of an expansive $1.7 trillion package, signed…

The National Organization for Rare Disorders (NORD) is requesting applications from patient advocacy organizations to host new or existing patient registries for rare disorders, such as Lambert-Eaton myasthenic syndrome, on its IAMRARE platform. To expand its collection of patient-reported data, which could lead to new treatments and…

The National Organization for Rare Disorders (NORD) is leading an effort by organizations representing or treating people with rare diseases, all calling on federal lawmakers to include key U.S. Food and Drug Administration (FDA) programs and reforms in a year-end spending bill. A letter written by NORD and signed by 126…