LUPUS EUROPE

LUPUS EUROPE Uniting People with Lupus throughout Europe We are a non profit independent organisation.

LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across Europe. We aim to support and empower our national organisation members, sharing information with them and promoting better patient-centred processes, both within the healthcare field and at a political level. We also work tirelessly to improve access to healthcare for all lupus patients, advocating on their behalf at EU level. LUPUS EUROPE VISION:

A fulfilling life for all people with lupus in Europe until we have reached a world without lupus.

🚀   &   are currently offline as we continue improving them.🛠️You thought they couldn’t get better? We know they can, & ...
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!

🎥 Did you miss our ELM 2026 Recap Webinar?😃 Watch it now on our YouTube channel!👉 Our Patient Advisory Network (PAN) mem...
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!

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

🚨 Today is  ! Which stands for WOrld Young Rheumatic Disease Day.🌍 Through this global event, we can spread the word tha...
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

🔴 Tomorrow is  !🦋 And we will be sharing tips and information on how   can affect children.Help us raise awareness, whic...
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

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

Thank you so much for bearing with us. We’re experiencing some unexpected technical difficulties with Facebook Live in r...
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 ...
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

✅ For all questions about  , remember you can visit   &  : multilingual AI tools developed by Lupus Europe, powered by 🔝...
12/03/2026

✅ For all questions about , remember you can visit & : multilingual AI tools developed by Lupus Europe, powered by 🔝sources including .

🌐 Visit https://lupusgpt.org/ & https://easy.lupusgpt.org/ for reliable answers to your lupus questions!

🔴 Although lupus nephritis remains one of the most serious complications for SLE patients, early diagnosis and adequate ...
12/03/2026

🔴 Although lupus nephritis remains one of the most serious complications for SLE patients, early diagnosis and adequate treatment make remission possible in many cases ✅.

🦋 Kidney disease is a silent illness. Getting to recognise its symptoms is key to getting an early diagnosis and preventing potential complications:

1️⃣ Urine changes (in frequency or colour)
2️⃣ Swelling in 🤲 🦶 🦵
3️⃣ Foamy urine
4️⃣ High blood pressure

Prevention is key! There are many ways to take care of your kidneys:
1️⃣ Have an active life 🚶‍♂️ 🏃‍♀️
2️⃣ Don't smoke 🚭
3️⃣ Have a healthy diet 🥗 🍏
4️⃣ Check & control your blood sugar & blood pressure
5️⃣ Take the appropriate fluid intake
6️⃣ Don't take NSAIDs regularly


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