There is still so much to learn about lupus in Europe. One of the ways this is happening is through surveys. Some are organised by LUPUS EUROPE, others by the European reference Networks or our partners, others by academics or other member groups… To help you contribute, we have assembled here some of the surveys currently available. Don’t hesitate to click on the respective links to provide your input to all!
🥰 Proud to see our Vice Chair & Secretary @AnnemarieS66 sharing her lived experience with cutaneous lupus for @ERN_Skin in the context of #RareDiseaseDay, helping raise awareness of skin involvement in #lupus.
https://jardin-ern.eu/patient-story/annemaries-story/
✅ After ~200h of work, how far have I been able to take #COGNILUP?
➡️ Online platform to assess #cognition in systemic #Lupus
➡️ 12 different #neuropsychological tests with gaming
➡️ Assessment of stress, depression, anxiety, pain, fatigue sleep issues
➡️ Patient & doctor modes
We are excited to share our newly released Scientific Programme for #EULAR2026, bringing together innovation, collaboration and the latest evidence shaping the future of rheumatology and patient care.
✨ Access the full programme: https://pulse.ly/3ldgscb7pq
#Rheumatology #Congress
🚨 New publication alert: @eular_org recommendations for the management of systemic lupus erythematosus with kidney involvement– 2025 update.
Why this matters from a patient perspective👇
😃 Thank you to all who attended our latest Youth Group webinar!
🌟 So many interesting questions were asked and addressed! Showing how important safe spaces arefor talking openly about lupus without judgment.
Did you miss it? Watch it here! 👇
https://www.facebook.com/LupusEurope/videos/1940376426515031
🚨 𝗟𝗮𝘀𝘁 𝗰𝗵𝗮𝗻𝗰𝗲❗
🙏 Help Prof @Lupusreference and his team validate the Lupus Brain Fog Severity Scale.
✅ Make lupus brain fog measurable.
⏱️ 5 minutes of your time can make a huge impact!
https://lupusresearch.limequery.org/337533?lang=en
✅ #COGNILUP is based on a series of 12 tests, assessing various aspects of #cognition relevant to the specific context of #Lupus and tailored to detect minor alterations. A series of 12 challenges to unlock the secret of the 12 golden butterflies, to improve QoL in #SLE 🦋
🚨Alcohol, recreational drugs & lupus: what are the risks?
Young people face real-life decisions that can affect their health. This Youth Group webinar offers clear, evidence-based information to help support safer, informed decisions.
Email secretariat@lupus-europe.org to join
🥰 Proud to see our Vice Chair & Secretary Annemarie sharing her lived experience with cutaneous lupus for ERN Skin in the context of #RareDiseaseDay, helping raise awareness of skin involvement in #lupus.
🙏Thanks to ERN Skin for helping us raise awareness of skin involvement in lupus.
💜And huge kudos to Annemarie for her tireless work and commitment to improving care and awareness for people living with lupus and skin involvement. We are grateful for everything you do!
Read her inspiring story now!
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🚨 New publication alert: EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement- 2025 update.
‼️ According to Lupus Europe's 2024 Swiss knife survey:
1️⃣ Kidney involvement remains one of the most worrying and impactful lupus manifestations for many people in Europe.
2️⃣ Kidney problems are among the manifestations causing the greatest long-term concern.
3️⃣ Only a small minority of patients report long-term stability without flares.
4️⃣ Patients want clearer goals, better communication, and care that looks beyond lab values alone.
That is why the 2025 update of the EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement is such an important step forward.
✅ These updated recommendations reinforce several key messages that matter to patients:
- Early and regular monitoring of kidney involvement.
- Timely kidney biopsy when needed.
- Clear treatment targets to preserve kidney function.
- A strong focus on combination therapies when appropriate.
- Long-term kidney protection, not only short-term control.
🌟 We are especially proud that our Chair, Jeanette Andersen, was part of the international task force that developed these recommendations, ensuring that the patient perspective was present at the table.
You can read the EULAR Recommendations here: ard.eular.org/article/S0003-4967(25)04412-7/fulltext
And the Swiss Knife Survey here: www.sciencedirect.com/science/article/pii/S1568997225000989
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😃 Thank you to all who attended our latest Youth Group webinar!
🌟 So many interesting questions were asked and addressed! Showing how important safe spaces arefor talking openly about lupus without judgment.
Did you miss it? Watch it here! 👇
Alcohol & Drugs - Lupus
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