News

The autoimmune biomarker CH50 was directly impacted by treatment with Soliris (eculizumab) in three people with neuromyelitis optica spectrum disorder (NMOSD), a case report has shown. According to researchers, this suggests that CH50 may be a useful…

The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to patients with compromised immune systems or those participating in gene therapy studies. That was the message of a recent…

The first trimester after giving birth or ending a pregnancy is a time of high risk for women with neuromyelitis optica spectrum disorder (NMOSD), with younger patients, those with more AQP4 antibodies, or inadequate prenatal care most at risk of an attack, a study…

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

People with neuromyelitis optica spectrum disorder (NMOSD) with difficulty swallowing are more likely to have clinical signs of brain involvement and more extensive disability, a small study suggests. Measures of a patient’s difficulty with swallowing could be used to indirectly assess brain involvement in NMOSD and the related disorder…

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…