The EMSP 2026 Conference in Berlin once again showed me how much is currently happening in the world of multiple sclerosis (MS) – and how important it is for us, as people affected by MS, to make our voices heard.
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My personal start to the conference day
For me, EMSP 2026 started very early in the morning. I set off early to make sure I arrived in Berlin on time – and didn’t get back home until around midnight.
Honestly:
It was exhausting.
But it was absolutely worth every minute.
Because there’s something truly special about not just hearing about things online, but experiencing firsthand what is happening on a bigger scale – in research, in care, and above all, within the community.
Moving opening stories
The conference began on a very emotional and powerful note – with two personal stories.
Katerina Misiura was diagnosed with MS at the age of 14.
At first, her symptoms were not taken seriously. Later, she became an advocate herself, supporting others and building an MS community in Ukraine. Her story highlights how important access to treatment, support, and education is – especially in times of crisis, such as the war that eventually brought her to Germany.
Alda Fuentes lives with NMOSD (neuromyelitis optica spectrum disorder) and received her diagnosis after the birth of her child.
She spoke very openly about a time when she was completely dependent on others, lost relationships, and had to rediscover herself. At the same time, she shared how she now lives more consciously, manages her energy carefully, and has developed a new sense of strength.
Two very different stories – and yet they share a common message:
A diagnosis changes everything.
But it can also be the beginning of something new.
Why better diagnoses are so important
One of the central topics was the ongoing development of diagnostics.
The updated McDonald Criteria 2024 bring important improvements:
- faster diagnoses
- new biomarkers
- more precise classification
At this point, I really want to give special credit to Anke Salmen:
Her explanation was scientifically sound and at the same time so clear and easy to follow – which is far from a given with such a complex topic.
I’ve also covered the new McDonald Criteria in more detail in a separate article.
At the same time, one thing became very clear:
👉 The right diagnosis is crucial.
Because conditions like NMOSD or MOGAD can look very similar to MS, but require completely different treatments – and the wrong treatment can actually be harmful.
The “MS iceberg” problem
There’s one image that keeps coming up – and it’s something we really cannot emphasize often enough:
👉 MS is like an iceberg.
The visible part includes:
- MRI lesions
- physical impairments
The invisible part includes:
- fatigue (pathological exhaustion)
- cognitive difficulties
- emotional burden
Within the MS community, this concept is fortunately becoming more widely understood.
But in the broader society, it often still isn’t.
And that’s where a major problem lies:
👉 Many people with MS still face misunderstanding and prejudice in everyday life.
Because others can’t see their limitations.
Because they “look fine.”
Because they are told they just need to “try harder.”
👉 All the more reason to keep explaining this iceberg again and again.
I’ve also written a separate article about fatigue if you’d like to explore this topic further.
Data, policy, and why our voice matters
One theme ran through the entire conference:
👉 Data is crucial – but it needs to be used.
Initiatives like the European Health Data Space show:
- more collaboration
- better research
- and, in the long term, better care
And still, one thing remains clear:
There are many challenges ahead:
- unequal access to care
- different healthcare systems across Europe
- limited healthcare budgets
That’s exactly why one thing became very clear to me:
👉 We need to be visible.
This means, in practical terms:
- raising our voices
- following political developments
- voting
- and taking action, for example by reaching out to policymakers
Because healthcare policy affects us directly.
My key takeaway from the poster session
A personal highlight for me was the poster session – especially the poster
“Beyond Walking Disability: Fatigue as an Underrecognized Driver of Multiple Sclerosis Burden Across Disease Types.”
Fatigue is something I know very well – from my own experience and from many conversations with others affected by MS.
And maybe that’s exactly what makes this poster even more meaningful to me:
👉 I was personally involved in its development as one of two patient experts, helping to ensure that the questions and content truly reflect the real-life experiences of people living with MS.
Because this is where what many of us experience is finally backed up by evidence.
In this case, based on:
👉 45 qualitative interviews
👉 each lasting 50–90 minutes
This is not a small sample – it provides deep and meaningful insights into the lived reality of people with MS.
And that’s what makes the difference:
👉 These are no longer just individual stories,
👉 but robust, systematically collected findings.
In particular, you might find my ECTRIMS summary “From Fatigue to Focus” helpful, where I dive deeper into current research and perspectives on fatigue in MS.
Conversations during the breaks: MS Selfie
Beyond the presentations, the breaks were also incredibly valuable for me.
During that time, I helped run the MS Selfie booth – representing the team of Prof. Gavin Giovannoni.
Newly available at the stand were:
👉 The MS Selfie Cards in German.
They offer:
- a compact overview of immunotherapies
- clear and easy-to-understand information
- a solid foundation for making informed decisions
They were translated by Tabea Gringel, with support from
Hernan Inojosa,
Christoph Heesen,
Tjalf Ziemssen
– and I was also involved as a patient expert, helping to ensure they are easy to understand.
Additional materials I had at the booth, which I find very helpful, included:
👉 an overview of therapy switching
👉 key questions people with MS should consider
👉 and the comprehensive resources on the MS Selfie microsite, which are currently available in English
The conversations at the stand clearly showed:
👉 The need for accessible, easy-to-understand information is huge.
Day 2: A summary from a distance
I didn’t attend the second day of the conference in person.
I was back home – with my children.
And that was a very conscious decision.
👉 Especially when living with a chronic condition, I set my priorities very clearly.
My children come first.
I’m all the more grateful that my husband made it possible for me to attend on Friday.
So for Day 2, I’m sharing a summary based on the official reports – and connecting it with topics we’ve already explored more deeply here on the podcast.
New therapies: Hope, but still open questions
One major topic was new therapeutic approaches such as CAR-T cell therapy.
This fits perfectly with the fact that I recently had Barbara Willekens as a guest on my English podcast – she is an absolute expert in this field.
If you’d like to dive deeper into this topic, I highly recommend listening to that episode.
Stem cell therapy was also an important topic once again.
I’ve already covered this in the podcast with:
👉 Christoph Heesen (see my article on stem cell therapy)
👉 and Roland Martin (including a translated interview on aHSCT)
Menopause & MS: Finally getting the attention it deserves
A topic that is particularly close to my heart is menopause and MS.
I previously had Riley Bove as a guest on the podcast (you can find the original interview in English).
That’s why I’m especially glad to see:
👉 This topic is finally receiving more attention
👉 More studies are being conducted to answer open questions
PIRA: A long underestimated topic is coming into focus
I find it particularly important that PIRA is receiving more and more attention.
PIRA stands for:
👉 Progression Independent of Relapse Activity
This means:
👉 MS can worsen even without visible relapses.
This is exactly what many people with MS experience – and for a long time, it has not been sufficiently recognized.
If you’d like to explore this topic further:
I’ve recorded a podcast episode with Gavin Giovannoni about PIRA.
The future of MS care: A European challenge
Another major topic was the future of MS care in Europe.
And one thing became very clear:
👉 This can only be addressed at a European level.
Because the differences are significant.
In one breakout session, it was particularly striking to hear:
- how difficult access to modern therapies is in countries like Greece
- and even more challenging in Ukraine
For some people, there is only one option:
👉 participating in clinical trials
This can be an opportunity –
but at the same time, it is also a limitation.
Because ideally, there should be:
👉 a real choice
and not the necessity to move from one trial to the next
just to access effective treatment.
My conclusion from Day 2
Even from a distance, it becomes clear:
👉 Research is making significant progress
👉 Important topics are finally gaining visibility
👉 But access remains a major challenge
And that is exactly why collaboration at a European level is so important.
Looking ahead
What do I take away from this?
👉 Hope
👉 Respect for the complexity
👉 And a strong sense of responsibility
The challenges remain:
- access to care
- funding
- implementation
But at the same time, something very important is growing:
👉 A strong, connected community.
Final conclusion
For me, EMSP 2026 was more than just a conference.
It was:
👉 connection
👉 perspective
👉 and a call to action
We cannot afford to stay silent.
Because only if we are visible can real change happen.
See you soon and try to make the best out of your life,
Nele
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