Putting Neuromyelitis Optica Spectrum Disorder in Focus at ECTRIMS 2024

With over 10,000 rare diseases affecting 400 million people worldwide, these conditions are not only complex but frequently underserved.[1] That’s why at Amgen, we are committed to advancing science and developing treatments for patients with serious illnesses, including many rare diseases. They demand urgent attention and are a core and growing part of our mission to serve patients.

Shedding Light on NMOSD

Neuromyelitis optica spectrum disorder (NMOSD) is a rare and debilitating autoimmune disease driven by severe, recurrent central nervous system attacks which can result in blindness and paralysis, affecting more than 10,000 people in Europe.[2],[3]

NMOSD is often misdiagnosed or missed due to its similarities with other conditions, such as multiple sclerosis (MS).[4] As a result, it’s critical that neurologists, ophthalmologists and other colleagues work closely together to ensure proper diagnosis and treatment.

People impacted by NMOSD live with unpredictable attacks, with 90% likely to have recurrent episodes within five years of an initial attack.[5] Unlike other autoimmune diseases, individuals with NMOSD often do not fully recover from attacks, and permanent disability results from accumulating damage.[6]

In response, we have conducted research to better understand how biomarkers and imaging can be used to detect new disease activity in NMOSD. At ECTRIMS 2024, there will be an opportunity to hear the latest research on this topic at Amgen’s sponsored satellite symposium in Room A2 from 8:30 – 9:30 CEST on Thursday 19th September.

In our session titled, ‘Biomarkers and MRI: Considerations in Detecting New NMOSD Disease Activity,’ Professor Friedemann Paul will be joined by leading experts Professor Orhan Aktas, Professor Massimo Filippi and Professor Romain Marignier. Together, they will examine the current understanding of biomarkers in NMOSD, explore the role of asymptomatic MRI findings in detecting and predicting new disease activity, and review the potential value of combining biomarkers with imaging to enhance the understanding and prediction of NMOSD disease activity.

Supporting the Patient Community

Also, as part of our commitment to patients, we are delighted to be a sponsor of the ECTRIMS Patient Community Day on 20th September from 15:00 – 18:00 CEST.

This event brings together leading experts to discuss the latest research in MS, MOGAD, NMOSD and other neurological conditions with the people most impacted by them.

For us, fostering a sense of community for NMOSD patients and their families is an important part of our efforts. We have developed a range of materials for NMOSD patients to support them in their disease journey, including a patient-doctor discussion guide, a symptom checklist and an emergency medical resource card, which will be available onsite.

Come and Meet Us at Booth B40

Throughout the course of the congress, we will be at booth B40, so drop in, learn more about our data and the disease burden in rare conditions, including NMOSD.

References

Global Genes. Rare disease facts. Available at: https://globalgenes.org/rare-disease-facts/ Accessed: August 7, 2024.
Ajmera MR, et al. Evaluation of comorbidities and health care resource use among patients with highly active neuromyelitis optica. J Neurol Sci. 2018;384:96–103.
EAfPA (European Alliance for Patient Access). 2022. Unmet needs in Neuromyelitis Optica Spectrum Disorders in Europe [online] Available at: https://gafpa.org/wp-content/uploads/2022/02/EAfPA-NMOSD-Jan2022.pdf Last accessed: August 7, 2024.
Smith AD, et al. Factors associated with the misdiagnosis of neuromyelitis optica spectrum disorder. Mult Scler Relat Disord. 2023;70:104498.
Wingerchuk DM, et al. The clinical course of neuromyelitis optica (Devic’s syndrome). Neurology. 1999;53:1107–1114.
Borisow N, et al. Diagnosis and Treatment of NMO Spectrum Disorder and MOG-Encephalomyelitis. Front. Neurol. 2018;9:888.