News

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.

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 majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…

The first published case of a person developing ocular myasthenia gravis (MG) secondary to COVID-19 was described in a new report. The patient, a 65-year-old woman with a medical history of kidney cancer, pituitary tumor, and a blockage in the pulmonary artery in the lungs, ultimately was successfully…