News

Nominations Open for 2022 Eurordis Black Pearl Awards

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…

Standard MG Care Less Effective for Women, Danish Study Suggests

Women with myasthenia gravis (MG) given standard treatment improve significantly less in both objective and patient-reported outcome measures than do men, a study in Denmark with nearly five years of follow-up data reported. Notably, this sex difference was independent of age, disease duration, simultaneous health conditions (comorbidities), and prior…

Rare Case of MG Crisis Attributed to COVID-19 Vaccine

A very rare case of a myasthenia gravis (MG) crisis caused by the Moderna COVID-19 vaccine was described recently by researchers at St. Joseph’s Regional Medical Center in Paterson, New Jersey. “Although numerous studies have observed the relationship between active COVID infections and MG exacerbations, no known studies or…

Patient Dosing Begins in Phase 1/2a Trial of Oral NMD670

Patient dosing has begun in a Phase 1/2a clinical trial of NMD670, an investigational oral therapy by NMD Pharma aiming to improve motor abilities and quality of life for people with myasthenia gravis (MG). “We are pleased to announce the dosing of the first myasthenia gravis patient today…

Advocate Encourages Community Not to ‘Live in Silence’

Myasthenia Gravis (MG) Awareness Month may be wrapping up, but advocate Glenda Thomas is just getting started. Diagnosed at age 60 with the rare disease form known as MuSK MG, which attacks the muscle-specific tyrosine kinase receptors and can prevent muscles from contracting, Thomas now spends her waking hours…

Test That Tracks Eye Movements May Help in Diagnosing MG

Videonystagmography, a video-tracking system used to investigate balance disorders, can also detect eye muscle fatigue and recovery in myasthenia gravis (MG) patients, making it a potentially useful diagnostic test for MG, a study reported. The study, “A Novel Diagnostic Method for Myasthenia Gravis,” was published in…

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

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…