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…
The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases. “The RareLaunch program is central to NORD’s mission and history — community…
Local injections of the corticosteroid dexamethasone alleviated symptoms and resulted in complete remission in most patients with ocular myasthenia gravis, a small clinical trial has shown. Compared to systemic treatments, local injections treated symptoms faster, reduced side effects, and increased remission rate.
An analysis of the thymuses removed from people with myasthenia gravis (MG) found lower levels of micro RNA molecules (miRNAs) that may contribute to disease development by favoring increased production of pro-inflammatory proteins and cells, a study suggests. …
Argenx is looking for participants in an app-based international study of the impact and burden of myasthenia gravis (MG) on patients and their families. The company has released an app called MyRealWorld MG to gather information about individuals’ diagnosis, complications, treatments, activities, and quality of life, using…
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,” the…
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