People with myasthenia gravis (MG) felt high anxiety regarding COVID-19, experienced changes in their interactions with healthcare systems, and generally trust information coming from non-presidential federal government sources and local healthcare providers, according to a survey. The results indicate that targeted messaging strategies by trusted sources may help…
A case report describes how the so-called ice pack test helped diagnose ocular myasthenia gravis (MG) in a patient who showed no abnormalities in other assessments. The study, “Ice pack test in myasthenia gravis: a cool investigation at the bedside,” was published in the journal The…
The Muscular Dystrophy Association (MDA) is encouraging the U.S. Centers for Disease Control and Prevention (CDC) to recommend that people living with neuromuscular diseases (NMDs) have early access to any federally approved COVID-19 vaccine. The MDA made its request in a letter to members of the CDC…
A panel of 16 international experts has updated and expanded the recommendations for best management of myasthenia gravis (MG), based on the latest evidence in literature. “Some wealthy countries have established their own guidelines, but most of the world cannot do that,” Gil I. Wolfe, MD, chair of the…
To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…
In people with myasthenia gravis (MG), slow or slurred speech, called dysarthria, is associated with changes in three motor bases of speech — breathing, phonation, and articulation — according to a small study from Brazil. These findings support dysarthria as a common symptom of MG and highlight the importance…
The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…
UCB Biopharma and doc.ai have launched a digital trial aimed at improving the speed and accuracy of diagnosis and predicting symptom flares in myasthenia gravis (MG) patients by recognizing vocal and facial patterns. The app-based trial, which is currently enrolling, uses participants’ smartphones to record vocal…
Three people living with myasthenia gravis (MG) tell their stories in the three-part online documentary series “A Mystery to Me,” available from MG United, a patient-focused platform operated by Argenx. “The strength and resilience of the MG community humbles us every day, and we…
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…
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