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.

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!

30/06/2026

☀️ 𝗨𝗩 𝗹𝗶𝗴𝗵𝘁 𝗮𝗻𝗱 𝗹𝘂𝗽𝘂𝘀: 𝘂𝗻𝗱𝗲𝗿𝘀𝘁𝗮𝗻𝗱𝗶𝗻𝗴 𝘁𝗵𝗲 𝗱𝗶𝗳𝗳𝗲𝗿𝗲𝗻𝗰𝗲 𝗯𝗲𝘁𝘄𝗲𝗲𝗻 𝗨𝗩𝗔 𝗮𝗻𝗱 𝗨𝗩𝗕 𝗺𝗮𝘁𝘁𝗲𝗿𝘀.

Ultraviolet light is one of the components of solar radiation. In lupus, UV exposure can contribute to 𝘄𝗼𝗿𝘀𝗲𝗻𝗶𝗻𝗴 𝘀𝘆𝗺𝗽𝘁𝗼𝗺𝘀 𝗼𝗿 𝘁𝗿𝗶𝗴𝗴𝗲𝗿𝗶𝗻𝗴 𝗳𝗹𝗮𝗿𝗲𝘀 in some people.

💁‍♀️ That is why we are launching our campaign: to raise awareness of the impact UV light can have on people living with lupus, especially during summer.

🦋 Photosensitivity is one of the most common manifestations of systemic lupus erythematosus. In the Lupus Europe Living with SLE in 2020 survey, 𝗽𝗵𝗼𝘁𝗼𝘀𝗲𝗻𝘀𝗶𝘁𝗶𝘃𝗶𝘁𝘆 𝘄𝗮𝘀 𝗿𝗲𝗽𝗼𝗿𝘁𝗲𝗱 𝗯𝘆 𝟲𝟴.𝟱% of respondents.

But UV-related lupus symptoms do not always affect only the skin. UV exposure has also been associated with systemic symptoms such as 𝗳𝗮𝘁𝗶𝗴𝘂𝗲 𝗮𝗻𝗱 𝗷𝗼𝗶𝗻𝘁 𝗽𝗮𝗶𝗻, and may contribute to 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗮𝘁𝗶𝗼𝗻 in some people.

So what is the difference?

🔴 𝗨𝗩𝗕 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
🔸 Is mainly associated with sunburn.
🔸 Its intensity fluctuates during the day.
🔸 It is usually strongest around the middle of the day.
🔸 It mainly affects the outer layers of the skin.

🔴 𝗨𝗩𝗔 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
🔸 Penetrates deeper into the skin.
🔸 Is associated with skin ageing.
🔸 Its intensity is more constant during the day.
🔸 It can pe*****te clouds and windows.

🌡️ 𝗜𝗻𝗳𝗿𝗮𝗿𝗲𝗱 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
🔸 Is perceived as heat.
🔸 Feeling less heat does not necessarily mean there is no UV exposure.

‼️ This is important because UV exposure can still happen even when the sun does not feel strong. UVA rays can pass through clouds and some types of glass, which means UV protection may still be relevant on cloudy days, near windows, while travelling by car or during everyday activities.

Although not everyone with lupus is photosensitive, people living with lupus are encouraged to discuss UV protection with their healthcare team and to learn what protective measures are appropriate for them.

Learn more through :
https://f.mtr.cool/lptcxwpubz

You can also ask or questions about lupus and UV light:
https://f.mtr.cool/nfccvjbbep
https://f.mtr.cool/clxgzteshl

Information on Lupus100 is available in several languages:

🇩🇰 https://f.mtr.cool/lkmkxyanqw
🇩🇪 https://f.mtr.cool/jmyfwcgsae
🇪🇸 https://f.mtr.cool/kdixsnubvi
🇬🇷 https://f.mtr.cool/dpqkzkejog
🇫🇷 https://f.mtr.cool/lwhtfzpnte
🇮🇹 https://f.mtr.cool/utsezhzrqp
🇳🇱 https://f.mtr.cool/sbfwktzpdr
🇷🇴 https://f.mtr.cool/xbcdhkqyud
🇫🇮 https://f.mtr.cool/hkfvtmjobx
🇺🇦 https://f.mtr.cool/cgpmlevqlb

27/06/2026

☀️ can affect your health, especially if you have .

The WHO notes that hot weather can exacerbate existing medical conditions and that people with chronic illness may be more vulnerable during periods of extreme heat.

Has your doctor ever spoken to you about how to stay safe during extreme heat?

Reliable information can help you plan ahead and protect your health.

Before and during a heatwave:

✅ Plan essential outdoor activities for cooler hours
✅ Stay in the shade and keep indoor spaces as cool as possible
✅ Drink water regularly
✅ Avoid alcohol and limit sugary or caffeinated drinks
✅ Protect yourself from UV light if you need to go outside
✅ Check how your medicines should be stored
✅ Seek medical advice if you experience unusual symptoms or if symptoms persist

❓ Questions about lupus, UV and heat?

Explore reliable lupus information through , or . Free, multilingual, anonymous tools and resources, validated by lupologists and patients.

Save this post and share it with someone who may need it this summer.

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