CONFINED AT HOME ? Make the next few minutes useful by answering this short research on Patient Education!

LUPUS EUROPE and the ERN ReCONNET Patient representatives have launched a short survey to better understand how we can improve quality of life for people living with a rheumatic condition through better patient education. If you are a patient living with a Rheumatic condition or any other Chronic or rare disease, simply follow this link […]

HELP US COLLECT VALUABLE DATA FROM PEOPLE LIVING WITH LUPUS

As part of its cooperation with the ERN ReCONNET, Lupus Europe is launching an important survey, which we would like to ask you to disseminate as largely as you can to people actually living with lupus. We have made the effort of providing 13 different languages, and are open to adding new ones, so we hope […]

EULAR PARE 2019, the Highlights

The 22nd EULAR Annual European Conference of PARE took place in the stunning, historical city of Prague in the Czech Republic 5-7 April 2019 with over 120 delegates. PARE ‘People with Arthritis and Rheumatism in Europe’ forms an integral role at EULAR ‘The European League Against Rheumatism’. The presentations and workshops at the PARE Conference […]

The World Lupus Federation seeks your quick input

The World Lupus Federation asks people with lupus to take a 12-question survey about the emotional effects of lupus and about clinical trials. We must recruit 500 people with lupus to take this brief survey. There are only 12 questions. All responses are confidential. The results will be published on World Lupus Day, May 10. Use […]

Apply to the EULAR PARE: Knowledge transfer programme

Every year, EULAR grants a set amount to its knowledge transfer programme. The programme is designed to support patient organisations that wish to further develop their skillset through applying lessons learned by other organisations in the EULAR network. This knowledge transfer is mainly done through visiting an organisation in another country. The programme is open […]

KICK LUPUS – SUMMER 2018 CONTEST

LUPUS EUROPE is delighted to invite you to participate to its Kick lupus 2018 “Word Cloud” contest (*) There are so many ways to Kick Lupus a little (or a lot) further away!     This year, the “Kick Lupus Workgroup” came up with a motto: “Kick Lupus – Pushing the limits to reach a better […]

ERN ReCONNET questionnaire

LUPUS 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 […]

Eular 2018

Today 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 […]

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🦋 EULAR started yesterday!

This year, #EULAR2026 brings together a huge rheumatology community:

📊 5,705 abstracts submitted from 102 countries, a new EULAR record
📊 187 scientific sessions across 15 tracks
📊 More than 350 distinguished speakers from 43 nations

And Lupus Europe is here!

As promised, some of our PAN members are covering lupus-related sessions to bring key messages back to the lupus community.

🧑‍🤝‍🧑 One of yesterday’s highlights was seeing Marina Pietri present our poster on Sex & Lupus co-creation, with Rita Vieira also there representing the Youth Group’s work. The poster shows how young people with lupus worked with a clinician to create a safe, respectful space to talk about sex, intimacy and lupus, topics that are still too often left out of routine care.

A big thank you to Dr Cristiana Sieiro Santos for her support and collaboration in making this work possible.

🎥 If you haven’t watched the webinar yet, visit our YouTube channel and watch it there.

🧠 We also followed a session on fatigue, one of the symptoms people with lupus most often report as difficult to explain, measure and manage. The session looked at when tiredness becomes pathological, how fatigue can be assessed, and why lifestyle advice needs to be realistic and adapted to each person.

💬 Patient-doctor communication was another key topic yesterday. Have you heard about the Lupus Consultation Cards? Inspired by the work of NVLE in collaboration with ERN ReCONNET, they are a simple tool to help people prepare for appointments, organise symptoms and questions, and focus the conversation on what matters most. This is the idea behind our #MakeItCount campaign.

🌍 Dr Daniel Guimarães de Oliveira presented a poster on social determinants of health in lupus care, co-authored with our General Secretary Zoe Karakikla Mitsakou. This work shows how healthcare professionals, Patient Research Partners from Lupus Europe, local patient volunteers and social workers co-designed a practical framework to identify barriers such as financial pressure, health literacy, transport, social support and access to care, and connect them with local solutions.

📱 Digital tools were also part of yesterday’s programme, with discussions on how technology can support self-management, shared decision-making and patient empowerment. For Lupus Europe, this strongly connects with our work on reliable, patient-centred digital information, including #LupusGPT and #EasyLupus.

🔬 We also followed the session “The mitochondria: a new culprit for autoimmune diseases?”. The discussion explored how mitochondrial DNA and RNA may act as danger signals, activating immune pathways such as interferon responses and contributing to inflammation in lupus and other autoimmune diseases.

👏 Kudos to our PAN members and Board members for their great job on this first day of EULAR!

🦋 Stay tuned. Today will be another big day for Lupus Europe at #EULAR2026!

Our Chair, Jeanette Andersen, will speak in the session on non-pharmacological interventions to improve quality of life.

We also have a Meet the EULAR Expert session on “AI as a Partner in Care: Empowering the RMD Community with Information”, focusing on AI tools such as #LupusGPT and #EasyLupus, which will be delivered by Zoe Karakikla Mitsakou.
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☀️ Good morning from beautiful London!

#Eular2026 is here, and so are we‼️

💬 You may already know #lupusgpt. You may have read the paper in The Lancet Rheumatology. You may have tried the tool, shared it with a patient, or recommended it to a colleague.

📊 But there is more. More to do. More lessons learned from two years of building something genuinely patient-led. More to understand about what happens when patients, clinicians, and AI specialists work together from the very first question.

🦋 This week, we will be sharing it all.

#lupusgpt: more than you think. Further than you imagined.
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☀️ Good morning

📅 Tomorrow, the EULAR Congress begins!

🌍 #Eular2026 starts tomorrow, and Lupus Europe will be there!

🦋 We will be representing the patient voice, following the latest research, and sharing key updates with our community throughout the week.

Stay tuned for live updates, session highlights, and much more.

💬 Will you be following the congress? Let us know in the comments!
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📅 Tomorrow, the E

🔴 𝐑𝐞𝐦𝐢𝐬𝐬𝐢𝐨𝐧 𝐝𝐨𝐞𝐬𝐧❜𝐭 𝐚𝐥𝐰𝐚𝐲𝐬 𝐟𝐞𝐞𝐥 𝐥𝐢𝐤𝐞 𝐫𝐞𝐦𝐢𝐬𝐬𝐢𝐨𝐧 🔴

This is one of the most important insights from a new editorial just published in Rheumatology.

📋 The editorial responds to a study analysing five years of data from the Amsterdam SLE cohort. The findings are striking:

🔹 In over half of clinical visits, patients rated their disease as more active than their physicians did.
🔹 Even among visits meeting formal remission criteria, more than 1 in 3 patients still reported significant disease burden.

These discrepancies highlight an important gap between how disease activity is measured clinically and how lupus is experienced by patients in daily life

📊 According to LUPUS EUROPE’s Swiss Knife Survey, patients’ definitions of “disease control” often go far beyond normal blood tests. They include 𝗳𝗿𝗲𝗲𝗱𝗼𝗺 𝗳𝗿𝗼𝗺 𝗳𝗹𝗮𝗿𝗲𝘀, 𝘀𝘁𝗮𝗯𝗹𝗲 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁, 𝗾𝘂𝗮𝗹𝗶𝘁𝘆 𝗼𝗳 𝗹𝗶𝗳𝗲, and the ability 𝗹𝗶𝘃𝗲 𝗮𝘀 𝗻𝗼𝗿𝗺𝗮𝗹𝗹𝘆 𝗮𝘀 𝗽𝗼𝘀𝘀𝗶𝗯𝗹𝗲.

𝗦𝗵𝗮𝗿𝗲 𝘄𝗶𝘁𝗵 𝘂𝘀 𝘄𝗵𝗮𝘁 𝗿𝗲𝗺𝗶𝘀𝘀𝗶𝗼𝗻 𝗺𝗲𝗮𝗻𝘀 𝗳𝗼𝗿 𝘆𝗼𝘂. Let's make it visible.

The editorial, co-authored by Dr Alvaro Gomez from Karolinska Institutet, and Zoe Karakikla-Mitsakou, LUPUS EUROPE General Secretary, points to several possible ways this might be addressed:

✅ Incorporating patient-reported outcomes into treatment target definitions
✅ Using assessment tools that better integrate patient-reported symptoms
✅ Exploring broader target frameworks that better reflect what meaningful disease control may look like for people living with lupus

This reinforces why people with lupus must be involved from the start in shaping how treatment success is defined, measured, and pursued.

💬 Have you ever been told you are in remission but not felt like it?

Share what remission means for you in the comments. Let’s make it visible.

📖 Read the full editorial: doi.org/10.1093/rheumatology/keag259
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