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The European Lupus Meeting is a scientific congress focusing on clinical practice and lupus research in Europe, that takes place every other year. This year it will take place in Venice from October 5th – 8th. Between 500-700 people, with the majority being doctors from the rheumatology or immunology fields, but also various other specialties, will attend to get updated on what is happening in lupus.  Some people from industry and a few patients, among others, will also participate.
Earlier this year LUPUS EUROPE called all members and our online community to encourage the submission of abstracts with a patient perspective for the scientific review at the European Lupus Meeting 2016.
We received 6 eligible abstracts – and all 6 were accepted! Two for oral presentation in the programme and four for poster viewing during different sessions. This is a fantastic success rate and we congratulate everyone for their hard work:
Marina Falanga will present on THE ITALIAN SLE SURVEY BY WEB: INVESTIGATING PATIENTS’ UNMET NEEDS AND IMPROVING CARE SYSTEM THROUGH VIABLE ONLINE SURVEY TOOLS October 7th, Perla Room, at 12.10-12.20.
Davide Mazzoni will be giving his oral presentation of SOCIAL SUPPORT AND QUALITY OF LIFE IN SLE on October 8th, Casino Room 12.10-12.20.
Elena Forgione will present her poster Sociocultural context; Mind-Body; Doctor-patient relationship on the 7th, during the morning poster viewing session.
Amaia Dominquez will present her poster SYSTEMIC LUPUS ERYTHEMATOSUS; HEALTH-RELATED QUALITY OF LIFE (HRQOL); PAIN, also on October 7th, in the afternoon poster viewing session.
On behalf of Blanca Rubio, Kirsten Lerstrøm will present Capabilities of European lupus groups; Members of LUPUS EUROPE, also during the October 7th afternoon poster viewing session.
Patients are admitted without a registration fee which is a fantastic acknowledgement of the situation of the patients themselves as well as the groups they could represent. None have any funds to pay the rather substantial admission fee, when on sick leave or working on a voluntary basis. This year a small group of patient representatives has registered and, further to the above mentioned, a good group from Italy will be there, together with a couple from the UK, Denmark, Lithuania and France.
We are really looking forward to the four days of the European Lupus Meeting 2016!

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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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We are very proud to

🚨 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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🔴 Tomorrow is #WO

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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