LUPUS EUROPE

10/01/2026

🛠️ Maintenance alert:

We are carrying out maintenance work on our main website.

🌐 During this time, you may experience limited access or temporary disruptions.

In the meantime, you can visit and for lupus info!

Thank you for your support & understanding!

08/01/2026

🧠 Brain fog in lupus is real, but although it can be assessed using different tools, what we mean by “brain fog” has never been clearly defined in a lupus-specific way.

🙏 Help us and the research team change that.

✅ After a year of work, the Lupus Brain Fog Severity Scale (LBFSS) is now finalised, and we are in the validation phase.

If you live with lupus and experience brain fog, your participation is essential.

⏱️ It only takes a few minutes.

https://lupusresearch.limequery.org/337533?lang=en

07/01/2026

🚨Calling all men with lupus in Europe!

Join other men in this 𝗢𝗡𝗟𝗜𝗡𝗘 𝗘𝗩𝗘𝗡𝗧 organised by men with lupus.

📅 10th January- 𝘁𝗵𝗶𝘀 𝗦𝗮𝘁𝘂𝗿𝗱𝗮𝘆❗
🕙 10am CET
📍Online

E-mail ricky@lupus-europe.org to register

31/12/2025

22/12/2025

✅ New tool for essential lupus knowledge now available!

🧠 (Systemic Lupus Assessment score for Essential Knowledge) has just been officially published in Rheumatology and is now available worldwide.

🦋 SLAKE is a multilingual digital self-assessment tool created to help people living with understand what they already know about their disease and identify areas where they may want to learn more.

💜 We are proud to say that patient involvement was central from the very beginning. Lupus Europe actively contributed to the development, validation and dissemination of SLAKE alongside the scientific team led by Prof. Laurent Arnaud and Dr Antonin Satrin.

Remember! SLAKE is not a test. It’s a tool designed to help you understand which areas of lupus you already know well and where you could learn more. Try it now!

https://maladie-autoimmune.fr/SLAKE/

🌟 And if you want to keep learning, remember to visit and : two reliable resources to improve your lupus knowledge.

16/12/2025

📣 Register now by sending an email to secretariat@lupus-europe.org, and don't miss our Youth Group Webinar!

🚫 Alcohol, recreational drugs & lupus: what are the risks?
🌟 What young people living with lupus need to know to protect their health

🖥️ In this online webinar, Lupus Europe’s Youth Group will have an honest, evidence-based discussion with Dr Luca Moroni on how alcohol and recreational substances can interact with lupus, treatments, and long-term health.

The discussion will address risks, uncertainties, and real-life situations that are often overlooked, offering clear information to support open discussions, knowledge, and dialogue.

Save the date!

🗓 29 January 2026
⏰ 19:00 CET
💻 Online

10/12/2025

🇸🇪 Spotlight on Lupus Sweden!

💜 At our , Riksföreningen för SLE (Lupus Sweden) shared their inspiring work to raise awareness, spread knowledge and build connections across the lupus community in Sweden.

💬 Formed in 2017 as part of the Swedish Rheumatism Organisation, they now count almost 160 members. Their mission: to spread knowledge about lupus and counteract loneliness.

📘 One of their most beautiful achievements in 2024 has been the release of a children’s book, “My mother can have a butterfly on the nose”, written to help younger children understand what it’s like to live with a parent who has lupus.

🌸 Every May, they celebrate World Lupus Day with a national theme day, a tradition started in 2013! Each year, the event takes place in a different city so that all members across Sweden can feel included and represented.

🦋 Recently, they also launched a new lupus/SLE awareness pin, raising funds for lupus research and making lupus more visible to the public.

👏 Thank you, Lupus Sweden, for your dedication, creativity and compassion. A great example of how patient organisations bring people together and make lupus visible!

08/12/2025

📢 Calling all patients!

🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with presents unique challenges that need to be addressed.

✍️ That is why we invite you to participate in the survey by EURORDIS-Rare Diseases Europe.

Your insights can make a difference and help shape future policies that support people living with this condition.

🙏 Thanks for sharing your experience!

https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm

04/12/2025

📣 LupusGPT was featured at the European Patients’ Forum (EPF) Congress in Brussels!

The EPF Congress is the largest European event dedicated to strengthening patient involvement in healthcare systems, policy and research. It brings together leading voices from the European patient community and cross-sector experts to build more resilient, inclusive and patient-centric healthcare across Europe.

💜 This year, our poster was present thanks to the work of our Chair, Jeanette Andersen, and the support of Cathrine Hjelmeset from Lupus Norway and the Lupus Europe PAN, who represented us in Brussels. We are deeply grateful for their commitment.

🙏 We would also like to express our sincere gratitude to the EPF team for their remarkable support throughout the process. Their dedication ensured that LupusGPT was fully represented at the Congress, and we truly appreciate their efforts.

🧡 LupusGPT is built by patients to provide clear, accessible and reliable information, collaboratively validated by doctors and patients, about lupus in almost any language.

Try it now: https://lupusgpt.org/

03/12/2025

🟣 Living with systemic erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.

In fact, our Living With Lupus 2020 survey reveals the profound impact can have:

🔹 57.9% of respondents said SLE negatively affected their careers.
🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.

🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.

🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.