LUPUS EUROPE

Uniting People with Lupus throughout Europe We are a non profit independent organisation.

LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across Europe. We aim to support and empower our national organisation members, sharing information with them and promoting better patient-centred processes, both within the healthcare field and at a political level. We also work tirelessly to improve access to healthcare for all lupus patients, advocating on their behalf at EU level. LUPUS EUROPE VISION:

A fulfilling life for all people with lupus in Europe until we have reached a world without lupus.

14/09/2026

🇷🇸 A new way of staying closer to our members: Lupus Europe on Tour!

✈️ Lupus Europe on Tour is another new initiative designed to bring us closer to member organisations. It is about listening first, better understanding the local context and finding even more practical ways in which Lupus Europe can support and strengthen national member groups.

💫 Last weekend, Ricky Chotai, Lupus Europe Board Member, travelled to Belgrade to visit our Serbian member organisation, Udruženje obolelih od reumatskih bolesti Republike Srbije - ORS.

The visit was an opportunity to listen to local priorities, better understand where additional support may be useful and explore how we can make collaboration easier. Ricky met with the ORS team and members of the local clinical community, including Dr Mirjana Lapčević.

🦋 And this visit is not the last. More will follow!

If you are one of our member organisations and feel that closer support would be useful, please get in touch with us.

04/09/2026

🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life.

💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being.

🚨In addition to lupus, overlapping conditions such as Sjögren’s syndrome and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during in*******se, and the latter can increase the risk of complications that may affect overall well-being and intimacy.

💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).

‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care.

🔊 And that is why, on this , we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-being

12/08/2026

Preparing for a specialist appointment? 🩺

LUPUS EUROPE have created FREE Lupus Consultation Cards to help people with lupus prepare for appointments.

Designed by people with and healthcare professionals, these cards help you:
✅ Identify the symptoms affecting you most
✅ Prioritise what you want to discuss
✅ Prepare your top questions in advance
✅ Support more focused conversations with your healthcare team

The cards can be completed digitally on your phone or printed out and taken with you to your appointment. They're available in multiple languages and in both female and male versions.

🔗 Download your free consultation card here: https://www.lupus-europe.org/lupus-consultation-cards/

05/08/2026

💊 Are you finding it difficult to follow your treatment?

💜 You're not alone.

Sometimes the problem isn't forgetting.

It might be that:
• the tablets are too large to swallow
• dry mouth makes them uncomfortable
• painful hands make blister packs difficult to open
• you're worried about possible side effects
• you're afraid of injections.

☀️ Or something else entirely. Perhaps you've been advised to avoid sun exposure, but your work requires you to spend long hours outdoors, making it difficult to follow that recommendation.

💊 Maybe getting your medication is not always easy because of distance, access, travel, daily routines or other practical reasons.

💫 Whatever the reason, your medical team can only help if they know about it.

💬 Remember that your health comes first. Tell your healthcare team about anything that makes your treatment difficult. They may be able to help you find a solution that works better for you.

In this interview recorded during , Prof. Nathalie Costedoat-Chalumeau explains why these conversations are so important.

🎥 Watch the video:
https://youtu.be/hNlDFIGck7E

▶️ Don't miss out and visit the Videos on demand section on our website for the full series:
https://www.lupus-europe.org/videos-on-demand/

29/07/2026

🧠 As lupus specialist Prof Laurent Arnaud clearly states, “Your experience of brain fog is real. It is common. It deserves attention.”

That is why the Lupus Brain Fog Severity Scale (LBFSS) was developed: to provide a lupus-specific way to assess the severity and impact of brain fog and related cognitive symptoms.

Importantly, people living with lupus were not simply asked to approve a finished questionnaire. Their own descriptions of brain fog were the starting point for its development.

🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain how people living with lupus helped shape the from the very beginning.

🦋 Lupus Europe is proud to have contributed to this international work and to have supported meaningful patient involvement throughout the development process.

📖 Read the study:
https://lupus.bmj.com/content/13/2/e002148

23/07/2026

‼️Today is , a chronic autoimmune disease that affects 14-17.8% of patients.

💁‍♀️ Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.

➡️ Follow Sjögren Europe to know more.

20/07/2026

🧠 Brain fog is real.

For many people living with lupus, it affects everyday life, yet it has often remained difficult to measure.

✅ The new Lupus Brain Fog Severity Scale (LBFSS) is the first questionnaire designed specifically to assess brain fog in lupus.

🦋 Lupus Europe is proud to have contributed to its development through meaningful involvement of people living with lupus. It's another example of how patient perspectives help shape better research and better tools.

🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain why the LBFSS is such an important step forward in lupus care.

https://lupus.bmj.com/content/lupusscimed/13/2/e002148.full.pdf

15/07/2026

🦋 Understanding lupus is crucial for effective management and self-management.

💁‍♀️ Many of us know what lupus is, and we’ve been learning from trusted resources like and .

🤔 But… how much do we really know about SLE?
Do we know as much as we think we do?

𝐓𝐫𝐲 #𝐒𝐋𝐀𝐊𝐄 𝐚𝐧𝐝 𝐟𝐢𝐧𝐝 𝐨𝐮𝐭❗

🎯 SLAKE (Systemic Lupus Assessment score for Essential Knowledge) is a quick and easy online tool designed for people living with lupus to test their knowledge and learn more about the disease.

📝 44 questions, randomly selected from a pool of 394
⏱️ Around 15 minutes to complete
🌍 Available in 20 languages
📊 A score for each lupus domain and an overall knowledge score

💡 Whether you're newly diagnosed or have been living with lupus for years, SLAKE helps you identify what you already know and where there is room to grow. It is not about passing or failing. It is a chance to learn more and feel more confident when taking part in decisions about your health.

📣 The SLAKE study is still open! By taking part, you are helping researchers understand which aspects of lupus are well understood and where important knowledge gaps remain.

These insights could help guide the potential development of better information resources and tools, tailored to the real needs of people living with lupus in different countries and regions.

SLAKE has been made possible thanks to the leadership of Prof Laurent Arnaud and Dr Antonin Satrin, and the collaboration of an international team of lupus experts and patient representatives.

🥰 Lupus Europe has proudly contributed to this project since the very beginning, and we encourage people living with lupus worldwide to take part while the study remains open.

🔗 Complete SLAKE today and let us know what you think!

https://lupusresearch.limequery.org/775349

08/07/2026

☀️ As we close our campaign, here is one important reminder:

👉 UV protection in lupus is not only about sunny beach days.

😶‍🌫️ UV exposure can happen on cloudy days, near some windows, while travelling by car, or through certain artificial light sources. And in some people with lupus, its effects may not appear immediately.

‼️ That is why clear, reliable information matters.

Whether you have questions about UV light, photosensitivity, skin symptoms, flares, fatigue, daily life with lupus, or many other lupus-related topics, Lupus Europe provides free, reliable and multilingual tools to support you:

🔹 #𝗟𝘂𝗽𝘂𝘀𝟭𝟬𝟬
Patient-friendly answers to 100 key questions about lupus, including sun exposure and UV protection
https://lupus100.org/en/questions/can-i-sunbathe-with-lupus

Created with lupus experts & patients. Available in 19 languages.

🔹 #𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧
A free artificial intelligence tool to help people find reliable, valid lupus information in almost any language.:
https://lupusgpt.org/

🔹 #𝗘𝗮𝘀𝘆𝗟𝘂𝗽𝘂𝘀
Like LupusGPT, but designed to make the answers even easier to understand:
https://easy.lupusgpt.org/

🦋 Because lupus does not only affect clinic appointments. It affects everyday life.

✅ Stay informed. Ask questions. Use reliable resources.

01/07/2026

✅ Yesterday Lupus Europe took part in the DORIS+ meeting in London, alongside clinicians, researchers and patient representatives working on a definition of deep remission in .

🌟 Lupus Europe was wonderfully represented by Jeanette Andersen, Chair of the Lupus Europe Board, Francesca Marchiori, Lupus Europe Board and PAN Member, Blanca Rubio, PAN Member and Zoe Karakikla-Mitsakou, Lupus Europe General Secretary.

🦋 This continues Lupus Europe involvement in the work on remission in lupus, building on the original DORIS initiative, where Lupus Europe also contributed.

🤔 But what is DORIS?

DORIS stands for Definitions Of Remission In SLE. It helped establish a clinical definition of remission in systemic lupus erythematosus.

🐠 DORIS+ builds on that foundation and explores the concept of deep remission.

💁‍♀️ Since the original DORIS definition was published, emerging evidence has suggested that a deeper state of remission may be within reach for at least some people with lupus. DORIS+ aims to better define what that could mean.

This matters because remission is an important concept for research, clinical care and people living with lupus.

🦋 Lupus Europe is proud to be part of this important taskforce alongside many lupologists and researchers including Prof. Laurent Arnaud, Prof. Ronald van Vollenhoven, Prof. Zahi Touma, Prof. David Isenberg, Prof. Mariele Gatto, Prof. Ioannis Parodis, Prof. Eloisa Bonfá, Prof. Frédéric A. Houssiau, Prof. Andrea Doria, Prof. Ricard Cervera and Prof. Maarten Limper.

😃 We will keep you updated!

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