LUPUS EUROPE

21/04/2026

🌍 This month in our campaign, we highlight our “Living with systemic lupus erythematosus in 2020: a European patient survey”, published in Lupus Science & Medicine.

This large-scale study, conducted by Lupus Europe was led by Alain Cornet, Jeanette Andersen, Kirsi Myllys, Angela Edwards with the incredible support of Prof. Laurent Arnaud. The study analysed data from 4,375 patients across 35 European countries, providing one of the most comprehensive overviews of the burden of SLE in Europe from the patient perspective.

✅ Key findings include:

•⁠ ⁠A median diagnosis delay of 2 years, highlighting persistent gaps in early recognition.
•⁠ ⁠A high symptom burden, with a median of 9 symptoms per patient.
•⁠ ⁠Significant impact on education, employment, and daily functioning.
•⁠ ⁠Marked inequalities in access to care across countries.

📌 These data underline the importance of integrating the patient perspective into clinical practice, research, and health policy to improve outcomes in this complex disease.

https://doi.org/10.1136/lupus-2020-000469

😃 Stay tuned as we break down these findings throughout the month and explore what they mean for people living with lupus across Europe.

This study would not have been possible without the active support and dissemination of Lupus Europe National Members across Europe. A huge thank you to all National Members and to all who supported and disseminated the study, for making this possible for the lupus community.

14/04/2026

🤔 What can kidney biopsies really tell us in lupus nephritis?

🔬 Kidney biopsy is a key tool in the diagnosis and management of lupus nephritis. It helps doctors understand what is happening in the kidneys and guides treatment decisions.

But… could it tell us even more?

📽️ In this short video, Prof. Brad Rovin explains how ongoing research is exploring new ways to get deeper and more precise information from kidney biopsies with the goal of improving how lupus nephritis is monitored and treated.

👉 Watch here: https://youtu.be/nyw0Ug-Uap0?si=gOF2F_AzaL_R-4tC

Don't miss out and visit the playlist with all videos in the "Video on Demand" section of our website!

LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across Europe. We are a non profit independent organisation. We aim to support and empower our national organisation members, sharing information with them and promoting better patient-c...

07/04/2026

🌈 The right to health is a basic human right. Everyone must have access to the health services they need when & where they need them without 💶 hardship.

😔 30% of the global population is not able to access essential health services.

02/04/2026

🚀 & are currently offline as we continue improving them.

🛠️You thought they couldn’t get better? We know they can, & we’re making it happen.

In the meantime, for reliable, multilingual lupus information👉 https://lupus100.org/

💜Thanks for your support!

30/03/2026

🎥 Did you miss our ELM 2026 Recap Webinar?

😃 Watch it now on our YouTube channel!

👉 Our Patient Advisory Network (PAN) members and volunteers share their key takeaways from the European Lupus Meeting 2026.

👉 Doctors and researchers explain, in a clear, short, and patient-friendly way, key messages from their talks.

🎯 Click the link below and discover the latest advances in lupus, explained directly by experts:

https://www.youtube.com/watch?v=Bw5Iptu-ZNc

More insights from coming soon. Stay tuned!

25/03/2026

We are very proud to share that LupusGPT has now been published in The Lancet Rheumatology, one of the world’s leading medical journals in rheumatology.

For us, this is not only about a publication. It is about what LupusGPT stands for.

LupusGPT is free. It is patient-led. And it was built to help people living with lupus find reliable, accessible information in almost any language.

It began with a simple but important question: what could become possible if patients, clinicians, and digital experts truly worked together from the start?

That question was first opened up in a fishbowl discussion at the European Lupus Meeting 2024 on how the lupus community could get the best, but not the worst, out of AI. From there, LupusGPT was shaped through the care, intelligence, and effort of many people: volunteers, patient testers, clinicians testing across languages, people who gave feedback, and people already helping us share it with patients in clinics, organisations, and communities.

This publication matters because it shows that patient-led innovation belongs in the scientific world too. It shows that when patient voice is not added at the end, but built in from the start, something real can grow.

A heartfelt thank you to all authors: Zoe Karakikla-Mitsakou, Alain Cornet, Jeanette Andersen, Sarah Dyball, Cristiana Sieiro Santos, Daniel Guimarães de Oliveira, and Laurent Arnaud. Special thanks also to Daniel Guimarães de Oliveira for the thought, care, and belief he brought to this work, and to Professor Laurent Arnaud for his outstanding support, steadiness, and guidance.

And above all, thank you to everyone in the Lupus Europe community who keeps showing us why this matters.

LupusGPT. Free. Multilingual. Patient-led. And now part of the scientific record.

https://doi.org/10.1016/S2665-9913(25)00370-4

Read it for free now! You only need to register (registration is completely free and takes 1')

18/03/2026

🚨 Today is ! Which stands for WOrld Young Rheumatic Disease Day.

🌍 Through this global event, we can spread the word that children and young people get rheumatic diseases like lupus, too.

‼️ It is estimated that around 15-20% of patients are children, although it is rare that a child develops lupus before 5 years of age.

As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control.

🔴 On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids.

😰 The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information.

👉 Remember: it is impossible to learn everything about overnight! Your child's doctor is the best source of information.

Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management.

📷 Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness.

🐺 Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job!

Turn to your lupus association for support.

🤗 There are many organisations across Europe that can help you and your child cope with the disease.

More information on in children at : https://f.mtr.cool/oklkpqamyu

For more information on WORD Day, you can visit World Young Rheumatic Diseases Day - WORD Day

17/03/2026

🔴 Tomorrow is !

🦋 And we will be sharing tips and information on how can affect children.

Help us raise awareness, which is key for an early diagnosis & a quick referral to a specialised paediatric rheumatologist.

Share our posts and follow the World Young Rheumatic Diseases Day - WORD Day campaign.

More information on lupus in children at (19 languages):

https://f.mtr.cool/hnfukbkwdf

16/03/2026

Watch this Lupus Europe Webinar on the European Lupus Meeting (ELM) 2026, As Viewed by Lupus Europe's PAN Members & Volunteers!

Watch this Lupus Europe webinar titled "European Lupus Meeting (ELM) 2026 Debrief, as Viewed by Lupus Europe's Volunteers & PAN Members" to get the latest ne...

16/03/2026

Thank you so much for bearing with us. We’re experiencing some unexpected technical difficulties with Facebook Live in relation to the European Lupus Meeting (ELM) 2026 webinar due to air at 19:00 CET. The webinar is being recorded, and we will make sure it is shared with you as soon as possible.

16/03/2026

🌟Our Recap Webinar is today!

👨‍⚕️Some of the presenters will share the main takeaways from their talks.

🦋Also, some of our volunteers & PAN members will share their insights from the Congress.

Don’t miss it!

Register now by ✉️ secretariat@lupus-europe.org