Dear Members and Friends,

  
Spring is in the air – bringing renewed energy, hope, and enthusiasm – and this was certainly reflected at the first big event of the year for Lupus Europe.
 
From 4–7 March, we attended the European Lupus Meeting (ELM) 2026 in Lisbon, Portugal. Lupus Europe was a co-organiser of the meeting, in close collaboration with SLEuro, and it was truly inspiring to see the deep and meaningful involvement of patients throughout the entire programme – from the opening to the closing session, and everywhere in between. And when we say everywhere, we really mean everywhere!
 
We had:

• 14 excited and energetic Lupus Europe representatives
• 12 Fishbowl Chairs
• 9 abstracts supported by Lupus Europe
• Our Chair, Jeanette Andersen, speaking at both the opening and closing ceremonies
• 6 Lupus Europe co-chairs at scientific sessions
• 3 interventions in sessions and interactive workshops
• 3 speakers in satellite symposia

 
Alongside the strong patient voice, there was also a real sense of momentum in the science, with exciting new therapies on the horizon bringing fresh hope to people living with lupus.
 
Beyond the scientific programme, the meeting was filled with valuable discussions and working sessions on ongoing projects that we are excited to share with you in the coming months.
 
In this newsletter, we bring you the highlights of the meeting – we hope you enjoy!
 

For those who could not join us in Lisbon, or who would like to revisit some of the key moments, several resources and recordings from ELM 2026 are now available.

At the opening of ELM 2026, Lupus Europe Chair Jeanette Andersen welcomed participants to Lisbon and set the tone for a meeting built on real collaboration between patients, clinicians and researchers.

Her speech reflected on why patient involvement matters, why access to scientific knowledge must remain open to expert patients, and why progress in lupus must mean progress that reaches people across Europe — not only scientific discovery, but equitable benefit.

You can read Jeanette’s opening speech here:

During ELM 2026, Lupus Europe was unusually quiet on social media, not because there was little to share, but because our representatives were so actively involved throughout the meeting.

To help capture and share some of what happened in Lisbon, we organised an ELM 2026 recap webinar, as seen by the Patient Advisory Network members and volunteers who attended the meeting.

The webinar brings together key reflections, highlights, and takeaways from the congress, including the scientific updates, patient involvement, and project discussions that shaped an exceptionally active few days for Lupus Europe.
You can watch the ELM 2026 recap webinar

Watch Video Interviews from ELM 2026

Scientific meetings are full of important updates, but much of that knowledge does not always reach people living with lupus in a format that is easy to understand and access.

At ELM 2026, Lupus Europe worked with leading experts to translate key messages from selected presentations into short, patient-friendly videos. The aim was simple: to make the latest developments in lupus research and care more accessible, while keeping the scientific meaning accurate.

These videos are now available as part of the ELM 2026 playlist, together with additional recordings from the meeting.
You can access the full ELM 2026 playlist

Together, these resources offer a sense of the energy, scientific momentum, and patient involvement that shaped the meeting.
 

First Lupus Europe Award presented at ELM 2026 

ELM 2026 also marked the presentation of the first Lupus Europe Award.

The Lupus Europe Award was created to recognise the best abstract presentation as perceived by a jury composed exclusively of people living with lupus. The award was designed to encourage engagement between researchers and the patient community, recognise professionals involved in lupus research, stimulate patient involvement in scientific projects, and promote the ability to explain the relevance and key findings of scientific work in lay language.

The first Lupus Europe Award at ELM 2026 was given to the abstract presentation of:

“Presentation, Management and Development of Damage in 615 Patients with SLE Recruited over 40 Years- Associations with Sex and Ethnicity”

The work was carried out by Anisur Rahman, Maria Pisliakova, Nidhi Rege, Gullu Uzun, David Alan Isenberg, with Nidhi Rege and Maria Pisliakova conducting the research as young medical students.

We warmly congratulate the authors and thank all those who submitted their work for consideration. This first award reflects something very important to Lupus Europe: that research becomes stronger when scientists and people living with lupus are brought closer together.

ELM 2026 would not have been the same without the dedication, preparation, and energy of the Lupus Europe volunteers who took part.
 
Across the meeting, volunteers chaired fishbowls, co-chaired scientific sessions, contributed to workshops, spoke in sessions and symposia, asked questions, supported discussions, took part in project meetings, shared lived experience, and helped make the patient voice visible throughout the programme.
 
We are deeply grateful to every single volunteer who gave their time, thought, and energy before and during the meeting. Your contribution helped make patient involvement visible, meaningful, and embedded at ELM2026.
 
Thank you.

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