LUPUS EUROPE

25/05/2026

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 :

https://www.lupus-europe.org/lupus-consultation-cards/

20/05/2026

☹️ 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.

🦋 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 .
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: https://www.lupus-europe.org/lupus-consultation-cards/

18/05/2026

🗨️ 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: https://www.lupus-europe.org/lupus-consultation-cards/

🟣

14/05/2026

😱 New tool for lupus!

✅ Lupus Europe proudly presents the Lupus Consultation Cards: a tool designed to help both patients and healthcare professionals structure consultations, prioritise what matters to patients, and support more focused discussions.

Because lupus is complex, and consultation time is limited.

✔️ Set your priorities
✔️ Organise your thoughts
✔️ Focus the conversation

🌍 Available in 18 languages
📥 Download for free or fill it in online: https://www.lupus-europe.org/lupus-consultation-cards/

🟣

12/05/2026

🟪 Consultations don’t always leave enough time to cover everything that matters.

😩 Symptoms, concerns, and questions can quickly become overwhelming when living with lupus.

🍀 The Lupus Consultation Cards are designed to help you come prepared, prioritise what matters, and make the most of your time with your doctor.

✔️ Set your priorities
✔️ Organise your thoughts
✔️ Focus the conversation

🌍 Available in 18 languages
🔗 Download them for free: https://www.lupus-europe.org/lupus-consultation-cards/

🟣 Make your consultation count.

11/05/2026

🦋 Upcoming ERN ReCONNET webinar!

“CAR-T therapy in Systemic Lupus Erythematosus (SLE): explained to the patient”

😊 The webinar will feature Prof. Georg Schett as guest speaker and will be moderated by Prof. Marta Mosca and Jeanette Andersen, Chair of Lupus Europe and ePAG representative of the ERN ReCONNET SLE disease group.

📅 Date: 13 May 2026
⏰ Time: 16:00 CEST
💻 Format: Online webinar

This session is designed to help make complex scientific information more understandable for people living with lupus, patient advocates, healthcare professionals and anyone interested in SLE.

🔗 Register here:
https://us06web.zoom.us/webinar/register/WN_SE65ZaxFT9isuoXi0O6o8w #/registration

🎓 ERN ReCONNET Webinar | Systemic Lupus Erythematosus (SLE)

We are pleased to announce the upcoming ERN ReCONNET webinar:
“CAR-T Therapy in Systemic Lupus Erythematosus (SLE): Explained to the Patient”

How could re-engineering your own immune cells transform the future of lupus treatment?
This webinar breaks down the latest clinical results and real-world patient experiences, translating complex molecular science into clear, life-changing insights for the systemic lupus erythematosus (SLE) community.

👉 Please note that the webinar is available with subtitles in 36 different languages.

Event Details:
• Date: 13th May 2026
• Time: 16:00 CET
• Target Audience: healthcare professionals, patients, caregivers, and family members
• Dedicated to: Systemic Lupus Erythematosus (SLE)
• ✍️ Registration: rb.gy/s18q03

🎤 Speaker: Prof. Georg Schett
🎙 Moderators: Prof. Marta Mosca and the ePAG Jeanette Andersen

⚙️ ERN ReCONNET SLE Resources: https://reconnet.ern-net.eu/disease-sle/
🗞 Newsletter subscription: bit.ly/44wk7La
💻 Webinar Archive: https://reconnet.ern-net.eu/webinar/

11/05/2026

Oggi, nella Giornata Mondiale del Lupus Eritematoso Sistemico, il Tempio di Athena, a Paestum, si illumina di viola, colore simbolo della sensibilizzazione su questa malattia autoimmune.

Un segno di vicinanza e consapevolezza, per accendere l’attenzione sulla ricerca, sulla diagnosi precoce e sul sostegno alle persone che convivono con il lupus ogni giorno.

La luce che avvolge il tempio diventa così un messaggio condiviso: ricordare, informare, non lasciare soli 💜

Ministero della Cultura museitaliani Tiziana D'Angelo Gruppo LES Italiano ODV

10/05/2026

🦋 is coming to an end!

❤️ Thank you all for the support you have shown throughout this important day, as people around the world have come together to raise awareness of the impact lupus can have.

🌈 At Lupus Europe, we believe there is something very important we also need to show the world: our vitality, our energy, and our will to enjoy life, take part, contribute, and be heard.

🌟 Our vision is a fulfilling life for all people with lupus in Europe, until we reach a world without lupus.

😃 We work hard. We show up. We support each other. We all live with lupus in different ways, even if our amazing Lupus Europe family sometimes seems to forget about it when we are at an event, in a meeting, or working together for the organisation.

🦋 Lupus is an invisible illness with many faces. Let’s close this with our hopes, our laughter and our enthusiasm for life.

💬 That is why today we also want to remind you of our campaign and the 𝐋𝐮𝐩𝐮𝐬 𝐂𝐨𝐧𝐬𝐮𝐥𝐭𝐚𝐭𝐢𝐨𝐧 𝐂𝐚𝐫𝐝𝐬.

These cards are designed to help people living with lupus prepare for medical appointments, organise their thoughts, identify what matters most, and make consultations more focused and meaningful.

🌺 Visit our website, download the Lupus Consultation Cards, and use them at your next appointment.

https://www.lupus-europe.org/lupus-consultation-cards/

Because your priorities, questions, and needs deserve a place in every consultation.
Let’s .

10/05/2026

💜 Thank you to everyone who joined our Youth Group webinar on fertility, family planning & lupus today!

Important conversations like these help tackle fears, misconceptions & unanswered questions around lupus and reproductive health.

🦋 Don't forget to include this topic in the Lupus Consultation cards in your next appointment!

. Check out this new tool that helps patients prepare for consultations and improve communication with healthcare professionals.

Available in many languages!

📌 Download here:
https://www.lupus-europe.org/lupus-consultation-cards/

10/05/2026

‼️ It is estimated that about 50% of patients will suffer from nephritis, one of SLE's most dangerous & frequent complications.

💊 Routine checkups and available treatments make it possible for 60–70% of patients to achieve complete or partial remission.

10/05/2026

Lupus Europe Youth Group Webinar on Fertility & Reproduction