US Patient Groups Give Thumbs-Up to Rule Against Surprise Billing

The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…

Analysis of five bacterial markers present in the gut microbiome — the community of microbes living in the gut — may help in diagnosing myasthenia gravis (MG) in children, according to a Chinese study. The study, “Metagenome-wide association study of gut microbiome revealed potential microbial marker…

Throughout my thymectomy recovery, I am learning that we need to accept help when we need it, even if our lives aren’t precisely what we’d imagined. Consider that we want to keep growing into the most whole version of our potential selves. In that case, we have to…

I started working as a speech therapist at a large academic hospital in January 2020. I was excited to start, and my passion for the job was coming out of my ears. But lurking behind the joy of getting such a thrilling job was a buildup of anxiety, shame, guilt,…

AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology company, to help lower out-of-pocket prescription costs for specialty pharmacy patients. Medications attained through specialty pharmacies are those used to treat rare and chronic conditions in the U.S., and are often extremely costly. For…

Patients who start experiencing symptoms of myasthenia gravis (MG) after age 65 have an overall good prognosis and response to immunosuppressive treatments, according to a recent Canadian study. In addition, the presence of other medical conditions, or comorbidities, had no effect on the severity of MG symptoms or on…

For most of my life, I’ve been wary of meditation, which involves various mind exercises that help to build happiness and shrink stress. Perhaps I could blame my negative attitude about meditation on other factors, such as how it’s portrayed on TV. In reality, I never took the time…

Ultomiris (ravulizumab-cwvz) rapidly and sustainably eased symptom severity in adults with generalized myasthenia gravis (gMG), according to top-line data from a Phase 3 trial. Alexion Pharmaceuticals, the therapy’s developer, now plans to submit regulatory applications requesting approval of Ultomiris for gMG in the U.S., Europe, and Japan, later…

Shortly after I was diagnosed with myasthenia gravis (MG), the neurologist suggested I have a contrast CT scan of my chest. This would determine whether or not a thymectomy was necessary. My only memory of the CT scan was that the contrast made me feel like I’d peed my…

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…