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5 Years of advocacy for NMOSD and MOGAD: A milestone for the Netherlands, an opportunity for Europe
25.08.2025Guest article contributed by Mieke Bakker, Dutch NMO/MOGAD Working Group
The Dutch NMOSD/MOGAD working group is celebrating its fifth anniversary!
Five years ago the Dutch NMOSD/MOGAD working group joined the MS Society Netherlands (MSVN). Since then we have worked tirelessly to increase recognition, improve care, and enhance the quality of life for people with these rare neurological disorders. As we celebrate our working group’s fifth anniversary, we’re not just reflecting on our past achievements, we are looking ahead to a future where NMOSD and MOGAD receive the global attention they deserve.
Why NMOSD and MOGAD matter, internationally too
Like Multiple Sclerosis (MS), NMOSD and MOGAD are autoimmune diseases of the central nervous system. While they may resemble MS, they require a different approach to diagnosis and treatment. These conditions cause severe inflammation of the spinal cord and optic nerve with MOGAD also potentially affecting the brain. Without accurate diagnostics, such as antibody blood tests, patients risk permanent disability.
Despite their serious impact, these diseases remain too often overlooked. And that needs to change. While the Netherlands has several hundred patients, global numbers are much higher. The pharmaceutical industry is showing growing interest, creating opportunities for better treatments. With rare diseases, every voice matters, which is why the working group is focusing on stronger international collaboration
What have we achieved?
We proudly look back on what we’ve accomplished over the past five years.
- We have strengthened our network with an active Facebook group and a dedicated webpage that serves as a central resource for people with these rare conditions and their care givers.
- In collaboration with the ‘MS Center ErasMS’, we organize information sessions in Rotterdam. As a national expertise center, MS Center ErasMS plays a crucial role in care delivery and research advancement for NMOSD and MOGAD patients.
- We have also developed educational materials, including a brochure, an NMOSD video, podcasts and webinars featuring specialists like neurologists Dr. B.H.A. Wokke and Dr. J. Smolders.
These initiatives have helped bridge the knowledge gap between patients, families, and healthcare providers while building a stronger, more informed community.
Future plans: from the Netherlands to Europe and beyond
In the coming years, we aim to raise awareness among healthcare providers and policymakers ensuring patients receive the right diagnosis and treatment sooner. By collaborating with international partners, we can accelarate knowledge sharing, stimulate research, and influence policy development to improve treatment outcomes.
Patients with NMOSD and MOGAD deserve the best care, wherever they are in the world.
Join us!
Together we can make a difference, for patients in the Netherlands and beyond!
Want to help, share experiences or learn more? Email us at nmosdwerkgroep@msvereniging.nl.
More info: https://msvereniging.nl/over-ms/nmo-sd-mog
