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Lupus Europe – Info Centre

We want to share some key information and links that we found particularly relevant for people living with lupus in Europe. While we do our utmost to select credible sources of information and quality publications, the articles and links reflect the views of their authors rather than of LUPUS EUROPE.

EULAR Recommendations

Read the EULAR Recommendations for the Management of SLE: 2023 Update

LEAF - Lupus Expert system for the Assessment of Fatigue

Go to the LEAF tool for an assessment and personalised recommendations on improving fatigue

ACT EU Initiative

The Accelerating Clinical Trials in the EU (ACT EU) initiative was launched by the European Commission, the European Medicines Agency (EMA), and Heads of Medicines Agencies (HMA).  Find out more by visiting the website

Do you know ERN ReCONNET

This is the European Reference Network responsible for lupus

Inflammatory RMDs and Cardiovascular Risk

Read the EULAR brochure on Rheumatic and Musculoskeletal diseases, including lupus, and Cardiovascular Risk

Inflammatory RMDs and Mental Health

Gain essential understanding with EULAR’s brochure on Rheumatic and Musculoskeletal Diseases, including lupus, and Mental Health

What are ERNs?

Find out about Patient Involvement in the ERNs

Anifrolumab

Anifrolumab has now been approved by the European Medicines Agency (EMA) as an add-on therapy for the treatment of active, moderate to severe SLE

Voclosporin

Voclosporin has been approved by the European Medicines Agency (EMA) as an add-on therapy for the treatment of severe & active lupus nephritis in adults

Lupus reference tweets

Prof. L. Arnaud is very active on twitter, often with recent news in 1 slide

VACOLUP Study

Learn about the Tolerance of COVID19 Vaccines in Lupus Patients

EULAR on Vaccination

Read the EULAR View-points on SARS-CoV-2 vaccination in patients with Rheumatic and Musculoskeletal diseases (RMDs)

Lupus Forum Website

Find out about the Lupus Forum, an educational website dedicated to the dissemination of the latest developments in the field of lupus. It provides continuing medical education to clinicians.

Do you know ERN ReCONNET

This is the European Reference Network responsible for lupus

Phase 2 Data on Litifilimab in CLE

Read about the Positive Phase 2 Data on Litifilimab in Cutaneous Lupus Erythematosus

Lupus Europe STRATEGIES

LUPUS EUROPE • Intro
LUPUS EUROPE • Intro
Feb 21, 2019
LUPUS EUROPE • Research
LUPUS EUROPE • Research
Feb 21, 2019
LUPUS EUROPE • Members
LUPUS EUROPE • Members
Feb 21, 2019
LUPUS EUROPE • Heard
LUPUS EUROPE • Heard
Feb 21, 2019

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LUPUS EUROPE
2 days ago
LUPUS EUROPE

🫂This month, #KickLupus focuses on the power of support. Because whether you’re navigating lupus yourself or supporting someone who is, one thing is clear: no one should face it alone.

🦋 #Lupus is a lifelong condition that can potentially impact any tissue or organ in the body, affecting many aspects of life.

‼️It can also affect our mental health!

🌈 That’s why finding support is so crucial—it can transform how we cope with lupus, manage this autoimmune condition and thrive in life.

Check out the one in your country on our website and get in touch! www.lupus-europe.org/lupus-members/ ... See MoreSee Less

🫂This month, #KickLupus focuses on the power of support. Because whether you’re navigating lupus yourself or supporting someone who is, one thing is clear: no one should face it alone. 🦋 #Lupus is a lifelong condition that can potentially impact any tissue or organ in the body, affecting many aspects of life. ‼️It can also affect our mental health! 🌈 That’s why finding support is so crucial—it can transform how we cope with lupus, manage this autoimmune condition and thrive in life. Check out the one in your country on our website and get in touch! https://www.lupus-europe.org/lupus-members/Image attachmentImage attachment+3Image attachment
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I"m from Portugal 💜 Don't have much suport😢

LUPUS EUROPE
4 days ago
LUPUS EUROPE

The Lupus Europe Youth Group Webinar on SEX and #lupus is just around the corner!

🗓 May 3rd | 19h CET
🎙 With Dr Cristiana Sieiro Santos
Don’t miss this chance to talk openly about this topic in a safe and informative space!
📩 Register now:
secretariat@lupus-europe.org ... See MoreSee Less

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LUPUS EUROPE
1 week ago
LUPUS EUROPE

🚨 Today is #wordday2025! which stands for WOrld Young Rheumatic Disease Day.

🌍 Through this global event, we can spread the word that children and young people get rheumatic diseases like lupus, too.

‼️ It is estimated that around 15-20% of #lupus patients are children, although it is rare that a child develops lupus before 5 years of age.

As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control.

🔴 On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids.

😰 The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information.

👉 Remember: it is impossible to learn everything about #lupus overnight! Your child's doctor is the best source of information.

Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management.

📷 Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness.

🐺 Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job!

Turn to your lupus association for support.

🤗 There are many organisations across Europe that can help you and your child cope with the disease.

More information on #sle in children at #Lupus100: f.mtr.cool/gfhbfdafvv

For more information on WORD Day, you can visit World Young Rheumatic Diseases Day - WORD Day ... See MoreSee Less

🚨 Today is #WORDDAY2025! which stands for WOrld Young Rheumatic Disease Day. 🌍 Through this global event, we can spread the word that children and young people get rheumatic diseases like lupus, too. ‼️ It is estimated that around 15-20% of #lupus patients are children, although it is rare that a child develops lupus before 5 years of age. As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control. 🔴 On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids. 😰 The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information. 👉 Remember: it is impossible to learn everything about #lupus overnight! Your childs doctor is the best source of information. Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management. 📷 Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness. 🐺 Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job! Turn to your lupus association for support. 🤗 There are many organisations across Europe that can help you and your child cope with the disease. More information on #SLE in children at #Lupus100: https://f.mtr.cool/gfhbfdafvv For more information on WORD Day, you can visit World Young Rheumatic Diseases Day - WORD DayImage attachmentImage attachment+6Image attachment
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Herbalist SIMEON 𝐦𝐞𝐝𝐢𝐜𝐢𝐧𝐞 𝐩𝐫𝐞𝐯𝐞𝐧𝐭 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐇𝐞𝐫𝐩𝐞𝐬, 𝐥𝐮𝐩𝐮𝐬, 𝐀𝐋𝐒, 𝐓𝐢𝐧𝐞𝐚 𝐕𝐞𝐫𝐬𝐢𝐜o𝐥𝐨𝐫, 𝐂𝐊𝐃,, autism, fibromyalgia, kidney stones 𝐃𝐢𝐚𝐛𝐞𝐭𝐢𝐜𝐬. 𝐀𝐫𝐭𝐡𝐫𝐢𝐭𝐢𝐬 𝐌𝐒, 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞, 𝐬𝐚𝐲 𝐧𝐨 𝐭𝐨 𝐚𝐧𝐲𝐭𝐡𝐢𝐧𝐠 𝐫𝐞𝐥𝐚𝐭𝐢𝐧𝐠 𝐭𝐨 𝐯𝐢𝐫𝐮𝐬 & 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬, 𝐜𝐨𝐥𝐝 𝐬𝐨𝐫𝐞 𝐨𝐫 𝐭𝐡𝐲𝐫𝐨𝐢𝐝 𝐂𝐚𝐧𝐜𝐞𝐫, 𝐜𝐨𝐧𝐭𝐚𝐜𝐭 𝐡𝐢𝐦 𝐭𝐨𝐝𝐚𝐲 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐲𝐨𝐮𝐫𝐬𝐞𝐥𝐟 𝐟𝐫𝐨𝐦 𝐃𝐢𝐚𝐛𝐞𝐭𝐞𝐬, 𝐇𝐈𝐕, 𝐏𝐢𝐥𝐞 Brain tumor 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞✨ FB page below👇👇👇 www.facebook.com/doctorsimon1

𝐃octor Droigiangbe u* 𝐦𝐞𝐝𝐢𝐜𝐢𝐧𝐞 𝐩𝐫𝐞𝐯𝐞𝐧𝐭 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐇𝐞𝐫𝐩𝐞𝐬, 𝐥𝐮𝐩𝐮𝐬, 𝐀𝐋𝐒, 𝐓𝐢𝐧𝐞𝐚 𝐕𝐞𝐫𝐬𝐢𝐜𝐨𝐥𝐨𝐫, 𝐂𝐊𝐃,, autism, fibromyalgia, kidney stones 𝐃𝐢𝐚𝐛𝐞𝐭𝐢𝐜𝐬. 𝐀𝐫𝐭𝐡𝐫𝐢𝐭𝐢𝐬 𝐌𝐒, 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞, 𝐬𝐚𝐲 𝐧𝐨 𝐭𝐨 𝐚𝐧𝐲𝐭𝐡𝐢𝐧𝐠 𝐫𝐞𝐥𝐚𝐭𝐢𝐧𝐠 𝐭𝐨 𝐯𝐢𝐫𝐮𝐬 & 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬, 𝐜𝐨𝐥𝐝 𝐬𝐨𝐫𝐞 𝐨𝐫 𝐭𝐡𝐲𝐫𝐨𝐢𝐝 𝐂𝐚𝐧𝐜𝐞𝐫, 𝐜𝐨𝐧𝐭𝐚𝐜𝐭 𝐡𝐢𝐦 𝐭𝐨𝐝𝐚𝐲 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐲𝐨𝐮𝐫𝐬𝐞𝐥𝐟 𝐟𝐫𝐨𝐦 𝐃𝐢𝐚𝐛𝐞𝐭𝐞𝐬, 𝐇𝐈𝐕, 𝐏𝐢𝐥𝐞 Brain tumor 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞✨ FB page below👇👇 www.facebook.com/Droigiangbe-114637101534059/

LUPUS EUROPE
2 weeks ago
LUPUS EUROPE

🔴 Tomorrow is #WORDDAY2025!

🦋 And we will be sharing tips and information on how #lupus can affect children.

Help us raise awareness, which is key for an early diagnosis & a quick referral to a specialised paediatric rheumatologist.

Share our posts and follow the World Young Rheumatic Diseases Day - WORD Day campaign.

More information on lupus in children at #Lupus100 (multiple languages):

f.mtr.cool/qrvtyjqmpf ... See MoreSee Less

🔴 Tomorrow is #WORDDAY2025! 🦋 And we will be sharing tips and information on how #lupus can affect children. Help us raise awareness, which is key for an early diagnosis & a quick referral to a specialised paediatric rheumatologist. Share our posts and follow the World Young Rheumatic Diseases Day - WORD Day campaign. More information on lupus in children at #Lupus100 (multiple languages): https://f.mtr.cool/qrvtyjqmpf
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