Kirsten represents LUPUS EUROPE at ERN meeting in Vilnius

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A chance to meet up – Aiste, Aldevina and Ingrida from the Lithuanian Lupus group with Kirsten

For tweets and pictures from the event, visit LUPUS EUROPE’s twitter page.

From our recent newsflash:  On March 9th EU President of the European Commission, Jean-Claude Juncker, opened the third meeting and Kick-off of the European Reference Networks (ERNs) taking place in Vilnius, Lithuania.
Please see the short video presenting the concept of ERNs here .
European reference networks (ERNs) help professionals and centres of expertise in different countries to share knowledge. ERNs should:
– apply EU criteria to tackle rare diseases requiring specialised care
– serve as research and knowledge centres treating patients from other EU countries
– ensure the availability of treatment facilities where necessary
24 ERNs have been established, with LUPUS EUROPE the patient representative in the ReCONNet on rare and complex rheumatic diseases, along with, among others, Scleroderma and EURORDIS’ EPAG. For more information , please contact Kirsten.

For tweets and pictures from the event, visit LUPUS EUROPE’s twitter page.

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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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LUPUS EUROPE Uniting people with Lupus throughout Europe
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