MCB: Discussion about NMOSD

22.12.2025

The Workshop on Engaging with Young People and recently diagnosed, part of EMSP’s Membership Capacity Building (MCB) Programme, was held in 2022. It brought together representatives from various EMSP member organisations to share experiences and best practices. In this article, you can explore the main outcomes of the workshop.

Objectives

  1. To assess the current level of awareness among EMSP members regarding NMOSD and MOGAD.
  2. To identify which members already include NMOSD and MOGAD within their strategies, priorities, and activities.
  3. To understand members’ interest in addressing NMOSD and MOGAD in their future work.
  4. To inform decisions on the potential inclusion of NMOSD and MOGAD in EMSP’s Strategic Plan and statutes.

Introduction

The meeting started with a presentation of the topic and the purpose of this meeting. NMO and MOGAD are similar diseases to MS, affecting parts of the nervous system. Clinical features have commonalities with MS, thus diagnosis may be delayed, so is medical care. EMSP has been approached by members, patients, and stakeholders to raise awareness about NMO and MOGAD, considering the high risk of misdiagnosis experienced by patients with the aim to improve the care they are receiving at a crucial initial stage of their disease.

It can take several months or years before the misdiagnosis is found; meanwhile, people who have been first diagnosed with MS who have joined the MS community. EMSP needs to find ways to support those patients that are approaching the MS community.

From the discussion EMSP had in 2022 during the AGM with members: how can work on NMO and MOGAD be approach and how relevant it is to the MS community. EMSP, therefore aims to investigate:

  • The relevance of including NMO and MOGAD in the Strategic Plan and examine the current state of play within the members about NMO and MOGAD.
  • The awareness level among members about NMO and MOGAD
  • Which members already include priorities around these disorders within their strategy and activities?
  • Which members are interested in addressing this within their scope of work in the future?

Patient representative and advocate testimony – Elisabetta Lilli, President of AINMO

Journey started in 1992 when she lost her vision in her left eye. Two years later sensation affected strength with her leg. Despite the alarming signs, she didn’t receive proper diagnosis because of the absence of specific parameters. In 2004, she repeated the spinal cord imaging, she was diagnosed with MS. The puzzle continued with relapses in 2006 and 2013 but the situation was not understood. In 2014, she received the correct diagnosis of NMO because of the new biomarker set up. Her story mirrored the challenges that many face. Elisabetta continued and shared the unmet needs from a patient perspective:

Recognition and understanding: There is a pressing need to be acknowledged as individuals with a distinctive pathology. While related to but distinct from MS, NMO requires recognition for its unique characteristics and challenges.

  • Specialized neurological expertise: Access to specialized neurologists who possess the expertise to provide accurate diagnoses and tailored treatment plans is paramount, with a level of understanding that goes beyond general neurological expertise.
  • Multidisciplinary approach to diagnosis: NMO’s impact on multiple facets of health requires a collaborative effort from various medical disciplines for effective management
  • Physiotherapy services: Tailored physiotherapy services are crucial for individuals with NMO, addressing the specific mobility challenges that arise. These services not only contribute to physical well-being but also enhance overall quality of life.
  • Empowering assistance: Empowering assistance is vital to enable individuals with NMO to lead independent lives. This includes support in daily activities and the provision of resources to promote autonomy.
  • Psychological support: The emotional toll of facing a chronic and rare disease like NMOSD is substantial. Comprehensive psychological support is needed to help individuals cope with daily difficulties and adversity.
  • Guidance for activating care measures: A need for guidance and assistance in activating existing care measures is apparent. Individuals with NMOSD often require direction and support in accessing available resources and navigating the complex healthcare landscape.
  • Advocacy for improved measures: Advocacy is essential for pushing forward improvements in care measures, especially for policy changes, increased awareness, and enhanced support structures.
  • Promotion of access to treatments: Advocating for improved accessibility to existing treatments and actively promoting research for novel therapeutic options is crucial for the NMOSD community.

AISM has been instrumental in moving forward the NMO agenda, providing support and services to people with NMO.

Case study: Best practice from AISM – Italian MS Society – Federica Balzani

AINMO, the Italian NMO society was founded by person living with NMO, along with AISM. AINMO is a separate entity, but still sister organisation of AISM. AISM was in contact with people with NMO through its local branches and people with NMO wanted to be part of a movement that is related to their disorder. AISM had in its constitution covering MS and related disorders, so it was smoother to move forward with its activities on NMO. There are currently around 2000 people with NMO in Italy. There are 3 pillars:

Pillar 1. People
The work started with 8 focus groups to understand the unmet needs of people living with NMO were developed. Consequently, various activities and programs were developed:

  • Programs and resources were developed, such as a document on 10 important things to know about NMO (IT and EN material, link in Italian resources found at the bottom of this document)
  • Podcast series on NMO
  • Developing specific website for NMO
  • Specific closed Facebook group for people living with NMO
  • Part of AISM’s event for young people living with NMO, like their event for young people living with MS
  • Educational programs for nurses, neurologists, and psychologists to include specific focus on NMO.
  • Awareness projects for people living with NMO but also dedicated to the general public as videos 1) a diary of a girl living with NMO and 2) The story of Elisabetta Lilli

Pillar 2. Research
Registry of AISM has a new specific module for NMO and MOGAD. There are currently around 600 people with NMO included in the register.

Pillar 3. Rights
Represent and assert the rights of people living with NMO, especially focusing on advocacy like including the unmet needs of people living with NMO, evaluating in the right scientific way NMO, promoting recognising of NMO and MOGAD as rare disease.

The group had questions that Federica addressed:

  • What did AISM change in its constitution to be able to include NMO in its work → AISM had already included in its constitution “other related disorders” which simplified the process of expanding its work across NMO and MOGAD?
  • Are neurologists in Italy aware of how to diagnose NMO → There are educational programs to support this, especially to know difference between MS and NMO but not all specialists have this knowledge. It’s a rare disease so not all MS centers know the differences. This information is disseminated across events for neurologists to increase this awareness bit by bit. The landscape has improved

Discussion with members – Elisabeth Kasilingam and all representatives of member organisations

From the European and national level, Elisabeth mentioned that misdiagnosing NMO and MOGAD are considered as rare diseases and specific frameworks are needed. Further investigation is needed to understand how the MS community can be impactful in supporting people with NMO and MOGAD and how to push for better education to professionals.

The representative from the Hellenic Federation in Greece, mentioned that they can hear in conferences, professionals discussing about cases first diagnosed as MS but in recent years, differentiation with other diagnosis based on new biomarkers. There are competent neurologists that can differentiate the diagnosis, but this has happened just in the last few years.

Representatives from ARSEP mentioned that in France, ARSEP includes NMO and MOGAD for 10-15 years. They had a meeting in-person for adults and children as well as webinars. They have dedicated documents on NMO, and they support research in this area. A register also exists for 10 years and there are expert centers where there are specialised neurologists. The government supported the establishment of expert centers 5 years ago (Resources shared below).

Representatives from The Netherlands shared that since 2020 they have been in contact with the Dutch MS Society as an NMO group. They have dedicated time to improve awareness through adding information on the website of the society, developing a video to explain what NMO is, conducting a webinar during COVID, organising every 2 years they dedicate a patient day with neurologists, with monthly blog and a podcast. They are actively working to increase awareness on NMO and MOGAD and they have a patient group in which they coordinate with the MS Society.

MS Ireland, added that NMO and MOGAD are not currently part of the scope of the work of MS Ireland and that they are not frequently contacted by or made aware of people living with NMO or MOGAD. They currently do not possess information on the NMO or MOGAD communities but wish to remain part of these discussions to explore this further.

SPEM Portugal also shared that their MS Society also represent the persons with NMO and MOGAD.

Elisabeth highlighted that the NMO and MOGAD patients wish to have their own fields from the discussions that happened at ECTRIMS last year, so it is important to have this in mind when organising the coalition with the MS Societies to keep own priorities compared to the MS society’s. Janneke shared that the MS societies have big networks and may be more established, so it is important to keep the focus on NMO when coordinating priorities with MS Societies.

Elisabeth continued to discuss different priority areas for people with NMO/MOGAD to address in the bigger strategy and invited the participants to share their priorities.

  • Support earlier and improved diagnosis. Aim: to understand how this can be addressed on the policy level to improve diagnosis at European and national levels.
  • Need for more research on NMO, MOGAD and similar diseases.
  • Treatment options
  • Quality of life
  • Awareness, information, and resources development, to ensure all interested groups can learn from each other and utilise each other’s resources.
  • Needs for specialisation of care of healthcare professionals to accurately diagnose and care for people with NMO, MOGAD and related diseases.

Poland, shared a question on diagnosis and how treatment is provided. In Poland, to receive treatment, antibody AP4 needs to be positive. This increases the risk of delay of diagnosis as it depends on the required antibody tests.

This clinical question will be addressed in a different discussion. It is important to understand the treatment criteria between different countries. The relevance of sharing the information regarding the adoption of drugs in different countries was reminded to support the patients’ organisations to advocate within their countries for the more treatment options.

This will be addressed as part of a long-term plan to understand the landscape of NMO, MOGAD and related disorders and their different unmet needs, gaps, and treatment options to build a proper strategy around this topic.
Next steps

EMSP will build on the learnings from the discussion, but also will plan other discussion with existing NMO and MOGAD organisations and the industry to be able to develop a concrete proposal for EMSP’s council members on how to take this forward and how to support member organisations, to identify what support they need on capacity building to support people with NMO on national level. This follow-up will be undertaken when sufficient resources are available. Meanwhile, EMSP will keep raising awareness on the common issues affecting the people with MS and related disorders.

Resources shared by participants

This section was compiled by EMSP through links and resources shared by the participants who have been working on NMO and MOGAD within their society. Please note that for various resources, the language used was the national/local languages. Therefore, please use translating tools (such as Google translate, or translation options embedded within the website) while checking the documents. Thank you to the participants who have shared their material.

The Netherlands

Spain

Italy

Denmark

France

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