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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…