News

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

Almost all people with Lambert-Eaton myasthenic syndrome (LEMS) have generalized symptoms at disease onset, according to an analysis of data from a Dutch patient registry. That finding, and others, were similar between patient-completed questionnaires and medical records, which supported…

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…

Plasmapheresis, or plasma exchange, may be an effective way of managing small cell lung cancer-associated Lambert-Eaton myasthenic syndrome (LEMS) and paraneoplastic cerebellar degeneration (PCD), combined with peripheral nerve damage, a case report suggests. The simultaneous development of LEMS and PCD is usually associated with small cell lung cancer (SCLC)…

RARE-X, a collaborative platform for patient-controlled data collection, global data sharing and analysis, is partnering with the Broad Institute of MIT and Harvard to advance and support the discovery of new treatments for 9,500 rare diseases, including Lambert-Eaton myasthenic syndrome (LEMS). The collaboration will leverage Broad Institute’s…

The case of a man in whom a neuroendocrine tumor was found to be associated with Lambert-Eaton myasthenic syndrome (LEMS) underscores the importance of early diagnosis and treatment of the two rarely associated conditions. “To the best of our knowledge, this…

Lambert-Eaton myasthenic syndrome (LEMS) may be associated with a rare type of skin cancer called Merkel cell carcinoma (MCC), according to a case study which also highlighted the need for multidisciplinary care in such complex cases. The case report, “Lambert-Eaton Myasthenic Syndrome and Paraneoplastic Cerebellar Degeneration…

The Canadian Agency for Drugs and Technologies in Health (CADTH) has recommended that Ruzurgi (amifampridine) be reimbursed for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in individuals 6 and older, but only if certain conditions are met. These include patients for whom the medication has been prescribed by…