Image shows the participants of the Lupus Europe 2nd Patient Panel on Youth, in a meeting room. Participants are split into two groups, across two tables and they are in the middle of a workshop. A slide on being a young patient with lupus is projected onto the screen. On February 3-5 2023, Lupus Europe organised its 2nd Patient Panel on Youth, bringing together 10 young people from all  over Europe to share their experience of living with lupus. The Panel addressed key issues young participants identified in their life with lupus and explored the possibility of creating a Lupus Europe youth group.

 

 

 

 

 

In their own words, Participants write: 

A group of European Young adults who are living with lupus met in Barcelona in February 2023 to discuss how to best support the next generation of people with lupus. Collectively, we put together what we would like to share about our treatment and experience of living with lupus with doctors.

To read the letter, go to: https://www.lupus-europe.org/wp-content/uploads/2023/07/Letter-to-the-Doctor.pdf 

 

As a result of this Patient Panel, many of those young adults went on to form the Lupus Europe Youth Group. To find out more about this initiative e-mail secretariat@lupus-europe.org. To apply to join the next Youth Group Meet Up due to take place in October 2023, go to:  https://www.lupus-europe.org/lupus-europe-youth-group-meet-up/

 

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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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