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…
A first person has been dosed in a Phase 2 trial evaluating mezagitamab (TAK-079), Takeda Pharmaceutical’s investigational antibody, as a therapy for generalized myasthenia gravis (MG), according to a press release. The trial (NCT04159805), beginning to enroll at select sites across the U.S., Canada, Italy, Poland,…
Among myasthenia gravis (MG) patients whose thymomas — tumors of the thymus — are surgically removed, those who are younger, have a more advanced thymoma, and whose surgery is other than a sternotomy or video-assisted thoracic surgery (VATS) appear to be at a higher risk of cancer relapse, a…
Melatonin supplements usually used to treat insomnia may aggravate the symptoms of myasthenia gravis (MG), possibly by activating the immune system or by interacting with other medications used to treat the disorder. That is the conclusion of a study describing three cases of MG patients whose…
Quality of life tends to be poorer in people with myasthenia gravis (MG) who develop the disease later in life, have more severe symptoms and little physical activity, or are either overweight or obese, a study found. Life quality tended to be better for those who exercise regularly, have…
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