English summary

Neuromyelitis optica study group (NEMOS)

Neuromyelitis optica (NMO, Devic’s disease) is increasingly recognized as autoimmune central nervous system disorder (CNS) with a pathogenesis distinct from multiple sclerosis (MS) despite a substantial overlap in clinical presentation. A major breakthrough was achieved with the discovery of a specific biomarker for NMO, the so-called NMO-IgG. Shortly thereafter, the aquaporin-4 (AQP4), the most abundant water channel of the CNS, was identified as the relevant target antigen. Routine testing for NMO-IgG or antibodies to AQP4 have facilitated the differentiation between MS and NMO. However, NMO still appears to be a widely unknown condition resulting in a high number of misdiagnoses. These may have detrimental consequences for patients as NMO usually requires an aggressive immunosuppression. Moreover, immunomodulatory disease-modifying agents administered in MS are of no proven efficacy or may even be harmful.

In the context of these challenges a Germany-wide network of NMO researchers and clinical neurologists was initiated in 2008 in order to merge and facilitate clinical and research activities around NMO spectrum disorders (NEMOS). Regarding expert clinical care, the participating hospitals and outpatient clinics offer advice to patients and referring physicians. In the context of the NEMOS network, more than hundred NMO cases have been recorded according to standardized criteria. In a second step, a standardized collection of biomaterial from NMO patients will be initiated. The long-term aim is to establish global NMO networks in order to improve our understanding of this disease and finally to initiate multi-center therapeutic trials.

letzte Aktualisierung: 16.09.2022

Aktuelles

Für Fachkolleg*innen: Einladung 3. Fallkonferenz GENERATE & NEMOS

13.02.2023 14.00 Uhr - 14.30 Uhr
Online Meeting via Webex
Kontakt: nemos@hhu.de

Plauderstunde: NMOSD - virtueller Stammtisch für Betroffene

Herzliche Einladung zur Plauderstunde !

Mittwoch 08.02.2023
19.30 Uhr

Hier könnt ihr euch registrieren :

zur Registrierung

Offenes Gespräch mit Experten - NEMOS auf dem Rare Disease Day am 28.02.2023 (PDF)

MEET YOUR EXPERTS –
Triff deine Experten!

Wann: 28. Februar 2023 durchgängig zwischen 10 und 18 Uhr

Teilnahme über ZOOM

Für Rückfragen: PatientInnen@nemos-net.de

NEMOS - Retreat

16.03. - 17.03.2023

Schloß Mickeln - Düsseldorf

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