NMOSD Awareness Month: Innovations in Diagnosis, Biomarkers, and Treatment

As March comes to a close, it serves as a reminder that the month is recognized as Neuromyelitis Optica Spectrum Disorder (NMOSD) Awareness Month, dedicated to increasing recognition of this rare autoimmune neurologic disease that primarily affects the optic nerves and spinal cord. The awareness campaign was established through collaboration among patient advocacy organizations, including the Sumaira Foundation for NMO and Siegel Rare Neuroimmune Association (SNRA), to promote education, support individuals living with the disease, and encourage research aimed at improving diagnosis, treatment, and long-term outcomes. Activities throughout the month often include educational campaigns, patient stories, and community initiatives designed to increase understanding of NMOSD among clinicians, patients, and the broader public.¹

To gain additional perspective on the evolving therapeutic and research landscape of NMOSD, NeurologyLive^® spoke with expert Peter Sguigna, MD, an assistant professor of neurology at UT Southwestern Medical Center in Dallas, Texas. In this Q&A, Sguigna discussed emerging technologies being incorporated into NMOSD research and care, including advanced imaging approaches and biomarker development. He also highlighted the expanding availability of targeted therapies that have transformed disease management in recent years, emphasizing the importance of individualized treatment decisions, ongoing clinician education, and continued research efforts to improve long-term safety and optimize therapeutic sequencing for patients living with NMOSD.

NeurologyLive: What technologies are you seeing incorporated into NMOSD research or care?

Sguigna, MD: I think it’s a great question because most clinicians are very familiar with the aquaporin-4 antibody, which is the linchpin for diagnosis for most people with NMOSD. But there’s an incredible variety and diversity of other technologies that are being incorporated into NMOSD care.

That includes traditional MRI, research MRI, and different visual outcomes—whether it’s acuity or structural technologies such as optical coherence tomography. There’s also an ever-growing fluid biomarker program, including markers like GFAP and neurofilament light, as well as complement components and B-cell genetics.

We’re all looking for more information about how to better treat people with NMOSD. It’s been an incredible journey seeing the field go from having no FDA-approved therapies to now having an increasing number of them. Clinicians are always interested in high-efficacy therapies, and we’re pretty good at preventing disability accumulation once patients have access to these treatments.

At the same time, this is a chronic disease, so we also think about the risk profile of each disease-modifying therapy. That raises questions about sequencing—what’s the proper sequence of therapies, and how can we minimize the risk that we expose our patients to over time.

Are you seeing any shifts or trends in the NMOSD research field?

It’s been incredible to see each therapy develop. At this point, we’ve spent a lot of time, energy, and resources focusing on access. We have wonderful therapies, but we’re very focused on getting them to patients as quickly and safely as we can. We’re also trying to reach more people with this rare disorder. It’s been wonderful to see the field really come together to get these promising therapies for patients.

As the dust settles, I think we’re going to start refocusing more on efficacy and safety. NMOSD is a chronic disease, and you may encounter someone early in life—sometimes even in the pediatric or young adult population. If it’s a woman of childbearing age, for example, you start having more nuanced conversations about pregnancy, lactation, infection risk, and what chronic exposure to therapy might look like.

Those long-term safety data, along with biomarker research, are areas where we’ll likely see a lot of attention going forward.

How can clinicians optimize treatment for patients with NMOSD?

From my perspective, treatment decisions are very individualized. Patients come to us from all sorts of walks of life, and each person has their own values, preferences, and risk tolerance. Some patients are very risk-averse, while others are more willing to accept risk depending on the potential benefit. Part of the clinician’s job is really to educate them.

Sometimes patients come in with relatively minimal disability and don’t fully understand how quickly and severely the disease can worsen. Because of that, the conversations around therapy are very nuanced and individualized. As we reach more newly diagnosed patients and they start therapies, we’ll probably dedicate more attention to questions such as whether there’s an optimal medication and whether there’s an optimal sequence of medications for these patients.

Are there misconceptions in the NMOSD field?

I wouldn’t necessarily call them misconceptions, but there’s always an opportunity for education becasue NMOSD can behave very differently from patient to patient. For some people, it’s a relatively mild disease, and they may not need a lot of disability prevention. For others, it can be very aggressive, with attack after attack that leads to repeated hospitalizations.

We don’t always understand why that variability occurs. That’s why there’s so much interest in biomarkers and other technologies that might help us understand which type of disease a newly diagnosed patient might have. If we can identify that earlier, we can have more personalized conversations with patients about treatment.

Looking ahead, what makes you most optimistic about the NMOSD field?

It’s really been incredible to see progress. NMOSD went from being a rare and very disabling disease that barely had a name to a condition with multiple FDA-approved therapies.

What gives me optimism is the momentum in the field. People aren’t sitting on their laurels—we want more disease prevention, better disease control, and less risk with chronic exposure to disease-modifying therapies.

It’s also encouraging to see this rare disease enter the broader medical vernacular. We’re seeing emergency physicians, ophthalmologists, and optometrists recognize NMOSD and help facilitate care pathways. That kind of awareness can accelerate diagnosis and help get patients onto optimal treatment much sooner.

Transcript edited for clarity.

REFERENCES
1. The Sumaira Foundation for NMO. NMOSD Awareness Month. Accessed March 31, 2026. https://www.sumairafoundation.org