News

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

Experiencing disease relapses after receiving a placebo in a clinical trial may change the perception of health in participants with neuromyelitis optica spectrum disorder (NMOSD) and lead to an underestimation of the disease’s impact on quality of life, a study shows. This effect — known as “response shift” —…

Enspryng has been approved by the Taiwan Food and Drug Administration for treating people 12 and older who have aquaporin-4 antibody-positive neuromyelitis optica spectrum disorder (NMOSD), Chugai Pharmaceutical announced. The import drug license…

People with neuromyelitis optica spectrum disorder (NMOSD) have similar knowledge and attitudes about COVID-19 as the overall population, an Iranian study suggests. The findings highlight several areas where better education about COVID-19 is warranted, the researchers wrote. Their study, “Assessment of mental health, knowledge, and attitude…

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…