When I discuss myasthenia gravis with new acquaintances, I usually get shocked faces and confused looks. I don’t blame them — MG isn’t exactly one of the most well-known rare diseases. I would even say it’s the Jan Brady of rare diseases: It’s always been there, but no one…
Most generalized myasthenia gravis (gMG) patients respond to Soliris (eculizumab) within three months of treatment, but some have to wait longer to achieve clinical responses, according to a post-hoc analysis of data from the Phase 3 REGAIN trial and its extension study. Notably, patients’ characteristics as evaluated at treatment start…
Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…
It is entirely typical not to feel fearless during health tribulations. I am confident in my decision to have a thymectomy in a few short weeks. Nevertheless, I am incredibly anxious and hyperfocusing on multiple days in the hospital and an unpleasant recovery. Myasthenia gravis warriors are brave…
Following a review of available clinical data, Immunovant has announced plans to resume clinical testing of the investigational medication IMVT-1401 in myasthenia gravis (MG) and other autoimmune conditions. Following discussions with regulatory agencies, the company is planning to launch a potentially pivotal trial of IMVT-1401 in…
Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…
Exercise and I have never been the best of friends. I would make a commitment to work out more, which included buying new sneakers, workout gear, and equipment that I absolutely did not need. And what did I do with all of these new purchases? I completed four…
At the end of last June, I began experiencing a health crisis provoked by hydroxychloroquine. I was diagnosed with myasthenia gravis (MG) in the emergency room after a month of worsening symptoms, including double vision, sudden slurred speech, a drooping eye, difficulty swallowing, and overall weakness. Three weeks before my…
From contributing to an interactive activities map to taking up challenges and advocating for local proclamations, supporters are set to mark Myasthenia Gravis Awareness Month, held each June. The aim is to raise global awareness among the general public, as well as among policymakers, public authorities, industry representatives, scientists, and…
My health seems to follow a pattern: I’ll start a treatment plan, it’ll go well for a little while, and then I’ll suddenly experience an uncontrollable flare. I’ll stubbornly suffer until my body decides that I should stop. I’m currently at the beginning of that cycle once again after recently…
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