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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)

Covid impact on rare diseases patients

look at the attached infographic made by EURORDIS based on 6945 answers

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

Live Facebook Feed

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20 hours ago

🦋 It's #LupusAwarenessMonth❗

🦵 #KickLupus: make it visible

Take part in the Living With Lupus in 2024 survey.

🗣️Your insights are crucial for capturing the diverse experiences of those living with #lupus across Europe.

𝗞𝗲𝘆 𝗽𝗼𝗶𝗻𝘁𝘀 𝗼𝗳 𝘁𝗵𝗲 𝘀𝘂𝗿𝘃𝗲𝘆:

1️⃣ Confidential and brief: Your identity stays anonymous and takes only 15 minutes.
2️⃣ Personalized and relevant: The survey adapts to your unique situation and covers aspects pertinent to your life with lupus.

👨‍💻 We're gathering data to:

🔹 Understand the current landscape of lupus treatment and management in Europe.
🔹 Identify key areas for support and improvement.
🔹 Ensure that the voices of those living with lupus are heard.
🔹 Recognise the diverse needs and challenges faced by the lupus community.

🦋 This survey will dive into your unique experience on 🩺 diagnosis & symptoms, 💊 treatment & 👨‍👩‍👧‍👦 how lupus affects your daily activities and the strategies you employ to manage it.

🔄 Please 𝘀𝗵𝗮𝗿𝗲 𝘁𝗵𝗶𝘀 𝘀𝘂𝗿𝘃𝗲𝘆 with your community and on your social media.

Languages available:

🇨🇿 Czech s.surveylegend.com/-NtkhoZPH8WNeA5e2ZCC
🇩🇰 Danish s.surveylegend.com/-NqmjTjyUXHGLMmAu5qS
🇩🇪 German s.surveylegend.com/-Nr0_sVBruuAHJTsHkuE
🇬🇷 Greek s.surveylegend.com/-Nr5KNkcBGDrsYl1F1xG
🇪🇸 Spanish s.surveylegend.com/-Nudx9pGv-1XtZ6OnYWs
🇬🇧 English s.surveylegend.com/-NqgyR5b7jLpCyBwEssv
🇪🇪 Estonian s.surveylegend.com/-Nt145Q5s02kLYdspFDs
🇫🇷 French s.surveylegend.com/-NrWK4Io8HFYwgd_JF9W
🇮🇹 Italian s.surveylegend.com/-NsvfEBWVnGf0eLQEC-0
🇳🇴 Norwegian s.surveylegend.com/-NrQBaJNQ4HcwZblYzh5
🇱🇹 Lithuanian s.surveylegend.com/-NqwWcQ0UhyMxDtCBYRD
🇳🇱 Dutch s.surveylegend.com/-NqgyeOSaTVcd7gBoK15
🇵🇱 Polish s.surveylegend.com/-Nr1vl1sxwISBcDaeOzP
🇷🇴 Romanian s.surveylegend.com/-NrUOqKxZuU6V6KLfWoG
🇷🇺 Russian s.surveylegend.com/-NtkhreGgEglDg9AeMfH
🇸🇮 Slovenian s.surveylegend.com/-Nt-wdNdIqT4v3ptXEM1
🇫🇮 Finnish s.surveylegend.com/-NrB_0Hf4Z-ZAZH55K7U
🇺🇦 Ukrainian s.surveylegend.com/-Nt1t0lpqlsn9jRPHe-3
🇧🇬 Bulgarian s.surveylegend.com/-NuOC4mQDrt8udTrqS85
🇵🇹 Portuguese s.surveylegend.com/-NuPMTJ2TjOzn2Oxa3Hi
🇭🇺 Hungarian s.surveylegend.com/-Nucu0zQ8je0kzInRWb8

Association Lupus erythémateux Belgique Luupuse Selts / Lupus Estonia Организация на пациентите с ревматологични заболявания Σύνδεσμος Ρευματοπαθών Κύπρου ΣύΡεΚ Lupus Suomi ry Association Francaise du lupus et autres maladies auto-immunes AFL + LUPUS FRANCE Lupus Erythematodes SHG e.V. Ελληνική Εταιρεία Αντιρευματικού Αγώνα ΕΛ Ε ΑΝ Α Lupus Poland Lupus Klub Motýlik Reumatikerförbundet Lupus UK Felupus Associação de Doentes com Lúpus
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2 days ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍️ Responda à pesquisa e compartilhe com sua comunidade.

🙏 Help us & Associação de Doentes com Lúpus achieve more answers to ensure that the Portuguese population is represented in the results

s.surveylegend.com/-NuPMTJ2TjOzn2Oxa3Hi

#LupusAwarenessMonth
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3 days ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻Compila il sondaggio.

🔊Condividi con il tuo network.

s.surveylegend.com/-NsvfEBWVnGf0eLQEC-0

🙏 Help us and Gruppo LES Italiano ODV achieve more answers to ensure that the Italian population is represented in the results
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1 CommentComment on Facebook

I want to introduce to you Dr. Ravi Herbal Home. Don’t die in silent 🔇 there’s still hope I understand you may have tried different medications but to no avail. Dr Ravi is here to help you cure any kind of diseases such as HIV, LUPUS, CANCER, PILE, ASTHMA , HEPATITIS, VIRGINAL INFECTION , ALZHEIMER-VIRUS, STROKE, HEART DISEASES, AORTIC, DISEASE AND KIDNEY DISEASES ETC . With the use of herbs Kindly contact him on WhatsApp +234(0)9025094850, or email: drravi5314@gmail.com or follow his Facebook page through the link. www.facebook.com/profile.php?id=61558012011988&mibextid=LQQJ4d

4 days ago

📅 𝗠𝗮𝗿𝗸 𝘆𝗼𝘂𝗿 𝗰𝗮𝗹𝗲𝗻𝗱𝗮𝗿❗

🤩 Lupus Europe is excited to invite you to a unique event on World Lupus Day:

🧑‍💻 “Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist”

🚀 𝗔 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝗼𝗿𝗴𝗮𝗻𝗶𝘀𝗲𝗱 𝗮𝗻𝗱 𝗹𝗲𝗱 𝗲𝘅𝗰𝗹𝘂𝘀𝗶𝘃𝗲𝗹𝘆 𝗯𝘆 𝗼𝘂𝗿 𝗬𝗼𝘂𝘁𝗵 𝗚𝗿𝗼𝘂𝗽.

📆 10th of May.
🕖 19:00 CET.

🙌 A space dedicated to discussing issues that impact youth, by the youth and for the youth.

This event is a tremendous opportunity to connect, learn, and share experiences related to lupus from a youthful perspective.

👩‍⚕️ Joining us will be the talented young rheumatologist from Italy, Francesca Crisafulli, who will answer your questions and engage in meaningful conversation.

Don't miss the chance to interact directly with a specialist in rheumatology!

🦋 At Lupus Europe, we deeply understand the importance of paying attention to the needs and voices of the young. This webinar reflects our commitment to supporting and including youth in the dialogue on living with lupus.

‼️ Register now by sending an e-mail to secretariat@lupus-europe.org ‼️
... See MoreSee Less

📅 𝗠𝗮𝗿𝗸 𝘆𝗼𝘂𝗿 𝗰𝗮𝗹𝗲𝗻𝗱𝗮𝗿❗

🤩 Lupus Europe is excited to invite you to a unique event on World Lupus Day:

🧑‍💻 “Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist”

 🚀 𝗔 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝗼𝗿𝗴𝗮𝗻𝗶𝘀𝗲𝗱 𝗮𝗻𝗱 𝗹𝗲𝗱 𝗲𝘅𝗰𝗹𝘂𝘀𝗶𝘃𝗲𝗹𝘆 𝗯𝘆 𝗼𝘂𝗿 𝗬𝗼𝘂𝘁𝗵 𝗚𝗿𝗼𝘂𝗽.

📆 10th of May.
🕖 19:00 CET.

🙌  A space dedicated to discussing issues that impact youth, by the youth and for the youth.

This event is a tremendous opportunity to connect, learn, and share experiences related to lupus from a youthful perspective.

👩‍⚕️ Joining us will be the talented young rheumatologist from Italy, Francesca Crisafulli, who will answer your questions and engage in meaningful conversation.

Dont miss the chance to interact directly with a specialist in rheumatology!

🦋 At Lupus Europe, we deeply understand the importance of paying attention to the needs and voices of the young. This webinar reflects our commitment to supporting and including youth in the dialogue on living with lupus.

‼️ Register now by sending an e-mail to secretariat@lupus-europe.org ‼️

1 CommentComment on Facebook

I ordered a remedy🌿☘️ for weight loss and herpes and it works after 18days of taking his medicine He also have the following treatment for ... DIABETES, HPV, CANCER, CHRONIC FATIGUE, LEAKY GUT HEALING, HSV, HIV, THYROID, PSORIASIS, COPD, PCOS, LUPUS, BP, HS and many more.👇👇👇🏿👇🏿👇🏿 www.facebook.com/-Dr-Abumere-herbal-remedies-592671634437907