A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…
News
Giving immunosuppressive therapy to patients with antibodies against aquaporin-4 protein (AQP4) and optic neuritis but no symptoms may help resolve observed lesions and prevent a relapse of neuromyelitis optica spectrum disorder (NMOSD), a case report suggests. The case study, “Radiologically isolated aquaporin-4 antibody neuromyelitis optica spectrum disorder,” was…
The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…
An analysis of pharmacological data supports the observed clinical efficacy of Soliris (eculizumab) in significantly reducing relapses in patients with neuromyelitis optica spectrum disorder (NMOSD) given the therapy in the PREVENT Phase 3 clinical trial. At its approved dose, Soliris led to rapid, sustained, and complete suppression…
A case report has detailed the clinical journeys of two identical twin sisters’ simultaneous diagnosis with neuromyelitis optica spectrum disorder (NMOSD), a rare occurrence. NMOSD was last reported in identical twin sisters in 1938, but those girls’ symptoms started two years apart, unlike the present case. The case report,…
The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…
Uplizna (inebilizumab-cdon) was just as safe and effective in people with neuromyelitis optica spectrum disorder (NMOSD) treated after only one symptomatic attack as those treated after two or more attacks, according to an analysis of N-MOmentum Phase 2/3 trial data. This sub-analysis had sought to understand how a…
The video series “Imagine My Life With NMO” has been launched by the Sumaira Foundation to help others in understanding what daily life can be like with neuromyelitis optica spectrum disorder (NMOSD). In the series, Sumaira Ahmed, the European foundation’s creator and a NMOSD patient, interviews other patients, their loved…
Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over the next five years, according to results from a 2021 survey. Definitive Healthcare, a healthcare commercial intelligence company, conducted…
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…
Recent Posts
- New biomarker may help gauge disease severity in NMOSD
- The longest night of the year offers hope of brighter days with NMOSD
- Advanced plasma exchange therapy effectively eases NMOSD attacks
- Reaffirming that access to healthcare is a human right
- Brain, spinal cord shrinkage linked to distinct NMOSD outcomes: Study
- Reflecting on what I’m grateful for softens the edges of NMOSD
- When my invisible illness meets my very visible disabled parking spot
- Study IDs environmental factors tied globally to higher NMOSD risk
- Inflammatory protein S100A9 ID’d as new treatment target in NMOSD
- Connecting with others who have NMOSD gave me hope