News

Patients Encouraged to Share Their Stories for NMO Awareness Month

This March, people with neuromyelitis optica spectrum disorder (NMOSD) are celebrating NMO Awareness Month by sharing stories of how the progressive autoimmune disorder has not stopped them from living meaningful lives. The initiative calls attention to NMOSD, a condition that affects approximately 15,000 people in the U.S. and 10,000…

Rare Disease Day Panel Opens Window to Patient Experience

BioNews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…

#ACTRIMS2022 – Blood Proteins May Help Predict Disease Course

Blood levels of two proteins, GFAP and neurofilament light chain (NfL), may help predict the course of neuromyelitis optica spectrum disorder (NMOSD), according to new research. Findings also suggest that many NMOSD patients have evidence of brain lesions with active inflammation without any associated symptoms, which indicates that disease…

Q&A With RARE-X Disease Data Platform Founder, Nicole Boice

The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…

Uplizna Reduces NMOSD Attack Severity, Analysis Shows

Uplizna (inebilizumab-cdon) effectively reduced the severity of attacks in people with neuromyelitis optica spectrum disorder (NMOSD) who continued to experience attacks after being treated with the therapy during the N-MOmentum Phase 2/3 clinical trial, recent data analysis shows. The data also demonstrated lower levels of key disease-related biomarkers,…

Rare Disease Day Events Bring Awareness, Equity to Patients

Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…

Claims Analysis Shows High Comorbidities, Care Costs for Patients

People with neuromyelitis optica spectrum disorder (NMOSD) experience a high prevalence of co-existing conditions, or comorbidities, which are associated with much higher healthcare costs, a claims analysis demonstrated. In particular, pharmacy costs for NMOSD patients with any comorbidity were “significantly higher” than for those with no co-existing conditions: a…