patients

After 2 relapses, patients start to overestimate their future risk: Study

People with neuromyelitis optica spectrum disorder (NMOSD) who have experienced only one relapse tend to underestimate their risk of future relapses, but patients who’ve had multiple relapses tend to overestimate this risk, a small study has found. The findings underscore the importance of clear communication with healthcare providers so…

88% of clinicians in survey prescribe approved NMOSD treatments

Nearly all neuroimmunologists treating patients with neuromyelitis optica spectrum disorder (NMOSD) who test positive for anti-AQP4 antibodies have prescribed one of the three currently approved therapies: Soliris (eculizumab), Uplizna (inebilizumab-cdon), and Enspryng (satralizumab-mwge). These are the findings of a U.S. survey that also found most responding…

Patients and Their Families Make the Best NMO Advocates

Years ago, I saw a film called “Lorenzo’s Oil,” which was based on actual events. A child, Lorenzo, got sick with a rare disease, and his health deteriorated quickly, but nobody could help him. His parents were determined to find a cure. I greatly admired their tenacity, and I’m…

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

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…