SAVE THE DATE

 2nd EULAR Young PARE youth meeting 
Friday 21 October – Sunday 23 October 2016
Corsendonke de Linde, Retie, Belgium


This email serves for you to block the dates in your calendar, for when our 2nd EULAR Young PARE youth meeting will take place. The location is Corsendonke de Linde, Retie, Belgium.  Please share this email with anyone who would be interested in attending. 

Why are you receiving this email? 
1. You’ve been chosen as the youth contact person for your organisation*
2. You are the dedicated PARE liaison and we want all PARE organisations to be informed what is happening in EULAR about activities from Young PARE
3. You are between 18 and 35 years old and have attended the EULAR Annual European Conference of PARE in Sofia 2016

Criteria for the participants include: 
• 18 to 35 years old
• living with a rheumatic or musculoskeletal disease (RMD), or closely working with young people with RMDs (e.g. carers, patient advocates)
• one young person per organisation*
• 35 participants in total will be chosen by the EULAR Young PARE working group  

* organisation (in this context means) either member organisation of PARE, youth organisation, youth group 

More information will follow very soon. We look forward to seeing you!


Kind regards,

Florian Klett, on behalf of

The EULAR Young PARE Working Group

Website: www.youngpare.org
Facebook: 
www.facebook.com/EULARYoungPARE
Twitter: 
www.twitter.com/EULARYoungPARE 

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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! 👇

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🚨 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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