We all know that there remains a lot to explore, and many unmet needs are still there, with regards to lupus and people living with lupus in Europe and in the world. Since March 2018, a multidisciplinary team including doctors, academics and patient advocates have shared their thoughts and aligned priorities to improve lupus care. LUPUS EUROPE was one of the active participants in the steering team of this project, funded by GSK. Today, on World Lupus Day,  the conclusions of this work are being released.

The Vision for Lupus report highlights three important Calls to Action to address these challenges:
Awareness: Raise awareness of lupus amongst the general public, people living with lupus, their families and healthcare providers to support early diagnosis, help people with lupus feel more acknowledged and better equipped to handle their condition;
Service Delivery: Improve access to specialist and multidisciplinary lupus clinics to ensure people with lupus are receiving the best quality care possible that addresses many aspects of this complex disease;
Clinical Research: Raise awareness of ongoing clinical trials to facilitate access to research participation and involve patients in the study design of lupus clinical trials, to ensure they address the aspects of the disease which matter most to patients.

We invite you to download and disseminate the   Vision for Lupus report and watch the short videos from steering team members  that highlight some of its important findings on www.visionforlupus.org

 

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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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🚨 New publication

😃 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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😃 Thank you to al

🚨 𝗟𝗮𝘀𝘁 𝗰𝗵𝗮𝗻𝗰𝗲❗

🙏 Help Prof Laurent Arnaud 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!

lupusresearch.limequery.org/337533?lang=en
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🚨 𝗟𝗮𝘀�
LUPUS EUROPE Uniting people with Lupus throughout Europe
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