Alain CornetLUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire […]
Alain CornetToday is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals. Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from […]
Alain CornetWe at LUPUS EUROPE wish you all a great World Lupus Day, full of hope and awareness! For this we have created a little animated video about LUPUS EUROPE. Please feel free to share! [wpvideo ILoguQxs] We would also like to repost a video made a couple of years ago about the importance of World […]
Alain CornetThe non-profit organisation ClAIR which groups lupus, arthritis and scleroderma associations (among them our French-speaking Belgian member) is organising a virtual congress from tomorrow, 30th March 2018, to 13th April included. LUPUS EUROPE will have a virtual stand in the congress. For more information, please see the press release: virtual congress CLAIR The congress is […]
Alain Cornet690 people participated in the European Lupus Meeting in Düsseldorf last week (March 21-24). This was 50% increase in comparison to the last ELM in Venice in 2016, which indicates a rising interest in this disease. Most of the participants were lupologists from all across Europe and there were even some from Australia, North- and […]
Alain CornetWe still have 3-5 available positions at our Lupus Europe youth panel in May. If you meet the criteria below and fit the geographical spread you could come into consideration. Are you interested in improving conditions for young people with lupus in Europe? Do you have something to say and want to be heard? Are […]
Alain CornetLUPUS EUROPE was present once again at this year’s PARE conference, which was held from 16th-18th February in Brussels. PARE provides an opportunity to meet with other patient organisations who are members of the PARE network, to hear the latest updates on some of the programmes, to influence PARE’s priorities for the next year, and […]
Alain CornetLUPUS EUROPE is the organisation that brings 26 national lupus groups from all over Europe together. To better include all countries in its activities and work, it is opening up a number of interesting volunteering opportunities for members of our national groups. There is no need to be a Lupus Expert, all that is […]
Alain CornetLUPUS EUROPE BECOMES FIRST ASSOCIATE MEMBER OF SLEuro, the European Lupus Society We are very proud to announce that LUPUS EUROPE has just become the first Associate member of SLEuro, the European Lupus Society. SLEuro is a voluntary and non-political association with social and philanthropic purposes that promotes scientific research and information with regard to […]
Alain CornetAn ERN (European Reference Network) ReCONNET Survey on awareness and knowledge of Clinical Practice Guidelines in rare and complex connective tissue disorders will be open until 10th February 2018. These surveys provide vital information to the doctors and researchers setting guidelines for our care. This survey can be filled in by patients or their families […]
✅ Happy to share that we have just published #LupusGPT... in the Lancet #Rheumatology 👍
Check the post below by @LupusEurope for the link 🔓
💥 KABOOM!
Our #LupusGPT work is now published in @TheLancetRheum‼️
🏆 A big moment for LupusGPT, but also for what can happen when patient voice is built in from the start, not added at the end.
Free. Multilingual. Valid information on lupus
https://doi.org/10.1016/S2665-9913(25)00370-4
🔊Don’t miss this new @eular_org PARE podcast episode exploring lupus in Ghana and patient-led impact in Africa.
🥰Proud to see it hosted by our Chair, @Jeanette_Lupus, who is also Chair of iPARE, with patients leading the conversation 👏🏻
🎧New EULAR PARE podcast episode!
✨Explore how patient advocates in Ghana & South Africa are driving innovation, inclusion, and real impact in rheumatology across the global PARE community.
👉Spotify https://pulse.ly/e3qgvrga4c Apple Podcasts https://pulse.ly/1o4lj04vs9
#eularPARE
🦋 Turn to your association for support.
🇪🇺There are many orgs across Europe that can help you & your child cope with #lupus.
Look for the one closest to you: https://f.mtr.cool/svytiwdruh
More, at #Lupus100 & #LupusGPT https://f.mtr.cool/ciwjiugezi https://f.mtr.cool/jkzxxpveyr
#WORDDAY2026
🍏 A well-balanced diet, with plenty of fruits, vegetables and whole grains, is key for #lupus patients.
🦋 The only specific diet that has been proven to improve #lupus activity and symptoms is the Mediterranean diet.
More ℹ️ on #Lupus100 https://f.mtr.cool/ndyadzsxxw
#WORDDAY2026
UV light could cause a flare➡️ it is advisable that patients avoid it.
Always wear 🌞protection when outdoors.
Even though skin manifestations may appear more frequently on the face, protective measures should be applied to all exposed areas
https://f.mtr.cool/qzqdhiyewe
#WORDDAY2026
💊Apart from pharmacological treatment, other non-pharmacological measures can help in #lupus management.
🏃Did you know exercise has been shown to improve SLE symptoms like #fatigue?
More at #Lupus100 https://f.mtr.cool/tdmxzdwibs
Also, follow our exercise programme!
#WORDDAY2026
#Lupus might sound scary at first, but the diagnosis doesn't mean your child will not be able to have a normal life.
Talk to your doctor about infection prevention & self-care measures.
Find reliable information on #Lupus100 https://f.mtr.cool/yhycnkhsny in your language
#WORDDAY2026
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.
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')
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🚨 Today is #WORDDAY2026! 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 #lupus 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 #lupus 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 #SLE in children at #Lupus100: f.mtr.cool/oklkpqamyu
For more information on WORD Day, you can visit World Young Rheumatic Diseases Day - WORD Day
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🔴 Tomorrow is #WORDDAY2026!
🦋 And we will be sharing tips and information on how #lupus 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 #Lupus100 (19 languages):
f.mtr.cool/hnfukbkwdf
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Watch this Lupus Europe Webinar on the European Lupus Meeting (ELM) 2026, As Viewed by Lupus Europe's PAN Members & Volunteers!
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