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Lupus Europe – Info Centre

We want to share some key information and links that we found particularly relevant for people living with lupus in Europe. While we do our utmost to select credible sources of information and quality publications, the articles and links reflect the views of their authors rather than of LUPUS EUROPE.

EULAR Recommendations

Read the EULAR Recommendations for the Management of SLE: 2023 Update

LEAF - Lupus Expert system for the Assessment of Fatigue

Go to the LEAF tool for an assessment and personalised recommendations on improving fatigue

ACT EU Initiative

The Accelerating Clinical Trials in the EU (ACT EU) initiative was launched by the European Commission, the European Medicines Agency (EMA), and Heads of Medicines Agencies (HMA).  Find out more by visiting the website

Do you know ERN ReCONNET

This is the European Reference Network responsible for lupus

Inflammatory RMDs and Cardiovascular Risk

Read the EULAR brochure on Rheumatic and Musculoskeletal diseases, including lupus, and Cardiovascular Risk

Inflammatory RMDs and Mental Health

Gain essential understanding with EULAR’s brochure on Rheumatic and Musculoskeletal Diseases, including lupus, and Mental Health

What are ERNs?

Find out about Patient Involvement in the ERNs

Anifrolumab

Anifrolumab has now been approved by the European Medicines Agency (EMA) as an add-on therapy for the treatment of active, moderate to severe SLE

Voclosporin

Voclosporin has been approved by the European Medicines Agency (EMA) as an add-on therapy for the treatment of severe & active lupus nephritis in adults

Lupus reference tweets

Prof. L. Arnaud is very active on twitter, often with recent news in 1 slide

VACOLUP Study

Learn about the Tolerance of COVID19 Vaccines in Lupus Patients

EULAR on Vaccination

Read the EULAR View-points on SARS-CoV-2 vaccination in patients with Rheumatic and Musculoskeletal diseases (RMDs)

Lupus Forum Website

Find out about the Lupus Forum, an educational website dedicated to the dissemination of the latest developments in the field of lupus. It provides continuing medical education to clinicians.

Do you know ERN ReCONNET

This is the European Reference Network responsible for lupus

Phase 2 Data on Litifilimab in CLE

Read about the Positive Phase 2 Data on Litifilimab in Cutaneous Lupus Erythematosus

Lupus Europe STRATEGIES

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🎉 In six days, we will be at #EULAR2026!

If you haven't heard of EULAR before, it's Europe's largest rheumatology congress 😃.

🌍 Every year in June, EULAR brings together over 13,000 researchers, clinicians, and patient advocates from more than 130 countries, with 170+ scientific sessions.

🦋 Lupus Europe will be there, and we'll be bringing you the latest on lupus from the congress floor.

🎙️ Not only that! Lupus Europe will be an active part of the congress! As in previous years, some of our Board and PAN members will be presenting posters and abstracts, chairing sessions, and taking the stage as speakers.

👀 Stay tuned!
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𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a 𝗻𝗲𝘄 𝘁𝗼𝗼𝗹, 𝗿𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗲𝗱 𝗯𝘆 𝗹𝘂𝗽𝗼𝗹𝗼𝗴𝗶𝘀𝘁𝘀❗

✅ When doctors recommend a tool, it is because they see how it can support real conversations in the clinic.

👩‍⚕️ In this video, Dr Sarah Dyball introduces the Lupus Consultation Cards.

🤝 These cards were created through collaboration between doctors and patients to help people living with lupus 𝗽𝗿𝗲𝗽𝗮𝗿𝗲 𝗳𝗼𝗿 𝘁𝗵𝗲𝗶𝗿 𝗺𝗲𝗱𝗶𝗰𝗮𝗹 𝗰𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻𝘀.

They can support patients in:
✔️ organising what they want to discuss
✔️ identifying their main concerns
✔️ preparing their top questions
✔️ making the consultation more focused

😃 For doctors, the cards can help them understand faster what matters most to the person in front of them.

💜 A simple tool. A better consultation.

👉 Download or fill in the cards online and take them to your next doctor's appointment and #MakeItCount:

www.lupus-europe.org/lupus-consultation-cards/
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☹️ Does joint pain affect your daily life? You are not alone.

💁‍♀️ According to Lupus Europe’s 2024 Swiss Knife Survey, joint pain and/or swelling were reported by 𝟳𝟮.𝟴% 𝗼𝗳 𝗽𝗲𝗼𝗽𝗹𝗲 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗦𝗟𝗘. It was also one of the symptoms 𝗺𝗼𝘀𝘁 𝗹𝗶𝗸𝗲𝗹𝘆 𝘁𝗼 𝘀𝘁𝗼𝗽 𝗽𝗲𝗼𝗽𝗹𝗲 𝗳𝗿𝗼𝗺 𝗹𝗶𝘃𝗶𝗻𝗴 𝗹𝗶𝗳𝗲 𝘁𝗼 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹𝗲𝘀𝘁, reported by 44.6% of respondents.

🦋 #Lupus is a systemic autoimmune disease that can affect different parts of the body, including the joints.

💜 Today is World Aimmune Autoinflammatory Arthritis Day, also known as #AiArthritisDay.
It is a day to raise awareness of autoimmune and autoinflammatory diseases, such as lupus, that can involve joint inflammation.

❌ But lupus is not “just joint pain”.

‼️ Lupus can affect the whole body. That’s why it is important that symptoms such as pain, fatigue, swelling, stiffness, and their impact on daily life are discussed clearly during medical appointments.

💬 To help with these conversations, take a look at the 𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a practical tool to help people living with lupus prepare for appointments and explain what matters most to them.

Inspired by NVLE and in collaboration with ERN RECONNET, these cards are available in 19 languages (more to come!).

📥 Download them here and make your consultation count: www.lupus-europe.org/lupus-consultation-cards/

#MakeItCount
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☹️ Does joint pa

🗨️ Lupus affects men, too! And its impact can be different from women’s, both physically and mentally.

‼️ From symptoms to how it is experienced and expressed, men living with lupus may face challenges that are not always recognised or addressed in consultation.

💁‍♂️ That's why we have created the Lupus Consultation Cards adapted for men: designed to help prepare for consultations, prioritise concerns, and make sure what matters most is addressed.

🌍 Available in 18 languages!
📥 Download for free and make your consultation count: www.lupus-europe.org/lupus-consultation-cards/

🟣 #MakeItCount
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