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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…
Treatment with immunosuppressant medications can delay disease progression in patients with ocular myasthenia gravis, which affects only eye muscles, to a more generalized form in which other muscles are affected, a study has found. The findings also showed that thymus gland abnormalities, as well as irregular results on facial…
Most people with myasthenia gravis (MG) — more than 70% — are in general “satisfied” with their treatment plan, as well as with their health insurance provider, according to the results of an online survey conducted by Myasthenia Gravis News. The survey showed fatigue was the most commonly…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…
Poor lung function and disease management, along with previous long-term use of corticosteroids, older age, and the presence of cancer are the most significant predictors of severe COVID-19 among people with myasthenia gravis (MG), according to a recent study. The findings also indicated that the odds of death…
People with myasthenia gravis (MG) are not at a higher risk of developing atrial fibrillation, a potentially serious heart condition that causes the heart to beat irregularly and often faster than normal, a study from Taiwan reports. The study, “Risk of subsequent atrial fibrillation in patients with myasthenia…
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…
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…
Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.
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