As President Trump signed the recently passed Right to Try legislation into law in a White House ceremony, Jordan McLinn of Indianapolis tried twice to embrace him. The third time, 9-year-old Jordan finally got the hug he wanted — as well as a kiss on the forehead. The video of…
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Between 30 percent and 50 percent of all thymoma patients – people treated for a tumor in the thymus gland – go on to develop myasthenia gravis, and as a case study reports, this disease’s appearance can sometimes be associated with a return of the cancer. The study detailed an…
Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — a rather nebulous term that means different things to different people. “Recently, there’s been much more of a focus on Quality of Life (QoL) issues, real-world evidence and patient-reported outcomes,” said…
Treatment with Rituxan (rituximab) provided sustained clinical improvement, increased muscle strength, and extended the time before disease worsening in myasthenia gravis, according to researchers. It also allows myasthenia gravis (MG) patients who are resistant to conventional treatment to reduce their dose…
Concentric needle-jitter is more accurate in diagnosing myasthenia gravis (MG) than repetitive nerve stimulation or acetylcholine receptor antibody positivity, a study reports. The study, “Repetitive nerve stimulation and jitter measurement with disposable concentric needle electrode in newly diagnosed myasthenia gravis patients,” was published in the journal…
Careful patient assessment and planning prior to surgery was needed to successfully remove a tumor from the thymus of a myasthenia gravis patient with a recent history of adult respiratory distress syndrome, researchers in Greece reported. Their case study, “Thymectomy in a patient with thymoma -related myasthenia Gravis and recent…
Surgeons in China have developed a new way of removing the thymus — a procedure called a thymectomy — in myasthenia gravis patients that may be both easier on the doctors operating and likely to improve post-operative outcomes in patients. The method was described and validated in the study, “…
Patients with myasthenia gravis (MG) have higher levels of a chemical modification — known as DNA methylation — on the CTLA-4 gene, which is linked to higher levels of autoantibodies and inflammatory molecules, according to researchers. The study, “CTLA-4 methylation regulates the pathogenesis of myasthenia gravis and the…
The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both the 1983 Orphan Drug Act and NORD’s founding at a dinner tonight in Washington, D.C. The 2018 Rare Impact Awards, to be held at the Andrew W. Mellon Auditorium, will be webcast via Facebook for those…
The European Union isn’t doing enough to protect the 30 million or so people with rare diseases who live in its 28 member countries, officials meeting last week in Vienna said. More than 900 people from 58 nations attended the 9th European Conference on Rare Diseases & Orphan Drugs (ECRD),…