LUPUS EUROPE

Startpagina
België
Brussels
LUPUS EUROPE

Uniting People with Lupus throughout Europe We are a non profit independent organisation.

LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across Europe. We aim to support and empower our national organisation members, sharing information with them and promoting better patient-centred processes, both within the healthcare field and at a political level. We also work tirelessly to improve access to healthcare for all lupus patients, advocating on their behalf at EU level. LUPUS EUROPE VISION:

A fulfilling life for all people with lupus in Europe until we have reached a world without lupus.

04/09/2025

🎥 What makes different? Watch this video to find out!

🌟 Unlike other AI tools, #𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧 𝗴𝘂𝗮𝗿𝗮𝗻𝘁𝗲𝗲𝘀 𝗮𝗰𝗰𝘂𝗿𝗮𝗰𝘆 𝗮𝗻𝗱 𝘁𝗿𝗮𝗻𝘀𝗽𝗮𝗿𝗲𝗻𝗰𝘆. Here’s how:

✅ Every response is based on a 𝗿𝗶𝗴𝗼𝗿𝗼𝘂𝘀𝗹𝘆 𝗰𝘂𝗿𝗮𝘁𝗲𝗱 𝗿𝗲𝗽𝗼𝘀𝗶𝘁𝗼𝗿𝘆 𝗼𝗳 𝘀𝗰𝗶𝗲𝗻𝘁𝗶𝗳𝗶𝗰 𝗱𝗼𝗰𝘂𝗺𝗲𝗻𝘁𝘀, including the latest EULAR recommendations and the website.

❌ #𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧 𝘄𝗶𝗹𝗹 not 𝗺𝗮𝗸𝗲 𝘂𝗽 𝗮𝗻𝘀𝘄𝗲𝗿s. If the information isn’t available in its database, it will honestly let you know.

🔍 Our database is regularly updated with verified information to expand its knowledge and utility.

🤖 Challenge with your toughest lupus questions and experience its precision and accuracy, and let us know your thoughts. Your feedback is very valuable to us!

Visit now https://lupusgpt.org/ and get 🤯 by this amazing tool.

And remember! Although is designed to provide valid information and be a valuable resource, 𝗻𝗼 𝘁𝗼𝗼𝗹 𝗰𝗮𝗻 𝗿𝗲𝗽𝗹𝗮𝗰𝗲 𝘆𝗼𝘂𝗿 𝗽𝗵𝘆𝘀𝗶𝗰𝗶𝗮𝗻.

02/09/2025

At Lupus Europe, our work goes far beyond what you usually see on social media. Each year, we engage in research, projects, and collaborations that aim to make a real difference in the lives of people with lupus across Europe.

✨ This year, we want to take you behind the scenes. And we will share with you — every month — one of our key studies or projects. From breaking myths to co-created research and international collaborations, discover how Lupus Europe is working every day towards a fulfilling life for all people with lupus until we have reached a world without lupus.

💜 Stay tuned — the journey starts now!

29/08/2025

🚨 𝗠𝗲𝗻 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗹𝘂𝗽𝘂𝘀 in Europe – we want to hear from you!

🍂 This autumn, LUPUS EUROPE is hosting a 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗣𝗮𝗻𝗲𝗹 𝗳𝗼𝗿 𝗠𝗲𝗻, a unique opportunity to connect, share, and contribute to a deeper understanding of what it truly means to live with lupus.

📍 Location: Leuven, Belgium.
📅 Dates: Friday 31st October (arrival) – Sunday 2nd November 2025 (departure after lunch).
👥 Facilitators: Andreas Panteli (Lupus Suisse) & Ricky Chotai (Lupus Europe).

The Patient Panel will bring together 10–15 men with lupus from across Europe in a supportive space led by peers living with the condition. The aim? To explore day-to-day realities, challenges, and strengths – and to ensure that men’s voices with lupus are represented.

✅ Who can apply?
✔ Any man living with lupus in Europe.
✔ Able to hold a conversation in English (doesn’t need to be perfect!).
✔ Looking to connect with others.

✅ What Lupus Europe provides:
✔ Full coverage of travel and hotel costs
✔ A safe, confidential space
✔ Peer-led discussions created by men with lupus, for men with lupus
✔ The chance to build friendships and support networks

📩 To apply, email: secretariat@lupus-europe.org 𝘄𝗶𝘁𝗵 𝗮 𝘀𝗵𝗼𝗿𝘁 𝗲𝘅𝗽𝗹𝗮𝗻𝗮𝘁𝗶𝗼𝗻 𝗼𝗳 𝘄𝗵𝘆 𝘆𝗼𝘂 𝘄𝗼𝘂𝗹𝗱 𝗹𝗶𝗸𝗲 𝘁𝗼 𝗷𝗼𝗶𝗻.

‼️ 𝗖𝗹𝗼𝘀𝗶𝗻𝗴 𝗱𝗮𝘁𝗲 𝗳𝗼𝗿 𝗮𝗽𝗽𝗹𝗶𝗰𝗮𝘁𝗶𝗼𝗻𝘀: 15th September 2025.

Let’s strengthen the voice of men living with lupus together.

https://www.lupus-europe.org/lupus-europe-patient-panel-men-2025/

27/08/2025

😨 Did you miss our debrief webinar?

😮‍💨 Don't worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our YouTube channel!

https://www.youtube.com/watch?v=bGy1H9OA-h0

25/08/2025

🌍 Webinar coming up!

, awarded winner of the 2025 Patient Partnership Good Practice Challenge, is a unique example of how collaboration between patients and clinicians can transform communication on rare diseases such as .

💡 Developed by ERN RECONNET and Lupus Europe, this free, multilingual resource provides answers to 100 questions most commonly asked by people living with lupus. Answers have been worked on collaboratively between lupus specialists and patients across languages; they are medically valid, relevant for patients and easy to understand.

Do you want to know more about this unique project? Don't miss out this upcoming webinar organised by EURORDIS-Rare Diseases Europe.

🎙️ Speakers:

Prof. Eric Hachulla, Chair of the Education & Training WG and clinician, ERN ReCONNET.

Jeanette Andersen, our Chair & ERN ReCONNET ePAG.

Zoe Karakikla-Mitsakou, our General Secretary.

✨ They will share how patient partnership enhanced this project, lessons learned along the way, and how future co-creation can support patient education and empowerment.

🗓️ 18 September 2025
⏰ 18:00 – 19:00 CET

➡️ Register now! https://www.eurordis.org/improving-patient-partnership-lupus100/

21/08/2025

🚀 Hot off the press!

🔖 New EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus.

🔎 Lupus is a very heterogeneous disease that can affect people in very different ways, making both treatment and research very challenging. Although different countries have developed national registries to better understand lupus, until now these registries were not comparable.

To ensure progress in both care and research, EULAR has now established a standardized framework for documenting patient and disease-related information, which will:

🩺 Improve patient care by ensuring all crucial elements for managing SLE are documented.

🔬 Facilitate collaborative translational and observational research by creating a foundation for harmonized data collection across international registries.

📊 Enable clinical benchmarking, promoting best practices and enhancing interoperable patient care.

🌍 Lay the groundwork for establishing a global SLE data space and accelerate the move towards personalized medicine in SLE care.

✨ In simple terms: doctors and researchers will now collect the same key information everywhere, making care more consistent and research much stronger.

🤝 Did you know? Two Patient Research Partners (PRPs) from Lupus Europe actively contributed to this important document — and we are so proud of them!

Read the full article and tell us what you think!

https://www.sciencedirect.com/science/article/pii/S0003496725042347

18/08/2025

📹 Check out this video to see in action!

💁‍♀️ While the interface might appear in English, you can type your questions in your preferred language. is designed to understand and respond in the same language you use, making it truly accessible to everyone, everywhere.

🌟 Experience firsthand how breaks down language barriers, providing accurate and reliable answers to your lupus-related queries.

Challenge it with a question in your language and see the accuracy for yourself!

https://lupusgpt.org/

Please note: Although is designed to provide valid information and can be a valuable resource, no tool can replace your physician.

14/08/2025

🌟 Discover : your trusted resource!

Developed by Lupus Europe and validated by top lupus experts and patients, this AI tool stands as a beacon of reliability and accuracy.

📚 is powered by a robust database built exclusively from rigorously vetted scientific sources. Among others, it contains the latest EULAR recommendations for managing and information from the website.

✅ This meticulous approach ensures that every piece of information provides is not only up-to-date but also aligned with the highest standards of medical research.

🌍 No matter where you are or what language you speak, is here to provide you with accessible, accurate, and understandable lupus information at your fingertips.

🤖 As an AI-driven platform, its multi-lingual capabilities are continuously expanding, so it can bring reliable lupus knowledge to people in most languages.

🔗 Ready to learn more about your health in a way tailored just for you?

Visit https://lupusgpt.org/ and let us know what you think!

Please note: Although is designed to provide valid information and can be a valuable resource, no tool can replace your physician.

08/08/2025

🛠️Scheduled maintenance alert

Today, between 12:00 and 18:00 CET, we will be carrying out maintenance work on both our main website & website.

🌐 During this time, you may experience limited access or temporary disruptions.

Thank you for your support & understanding!

07/08/2025

🦋 Living with lupus can feel overwhelming when you're trying to sift through an ocean of information that may or may not be reliable.

🥵 Are you tired of endless searches?
😵‍💫 Do you feel overwhelmed by medical jargon?

🙌 It’s time to try ! Our AI-driven tool is designed to cut through the noise, providing you with trusted, doctor/patient-validated information.

💫 Whether you're a newly diagnosed patient, a long-term one, or a caregiver, offers the support and knowledge you need to make informed health decisions alongside the invaluable support and guidance of your medical team.

🌍 Plus, with availability in multiple languages, ensures that high-quality lupus information is accessible to everyone, no matter where you are or what language you speak.

Visit https://lupusgpt.org/ now and share this post to help us spread the word. Help us empower more individuals to gain control over their lupus management!

04/08/2025

Are factors like fatigue, depression or pain preventing you from pursuing your fitness goals?

✅ Exercise plays a key role in RMDs & , as data shows that regular PA improves joint function & decreases fatigue.

Have you seen our exercise programme? It has been tailored for all skill levels and adapted for people with mobility limitations!

https://lupus-europe.org/me-lupus/

01/08/2025

☀️ Welcome, August!

🐺 This month, will focus on a topic that deeply affects how people live with : social determinants of health (SDH).

🚨 From income and education to access to care, health literacy, and even geographic location, social determinants of health (SDH) can shape every step of the lupus journey—first symptoms, diagnosis, management, adherence, and outcomes—yet they’re often overlooked in clinical care and policy.

That's why we’re kicking off this month with something we’re very proud of:

📢 The publication of our latest review in Autoimmunity Reviews- a collaborative effort between doctors and patients.

What makes this work truly special?

👉 A doctor and a patient — Dr Daniel Guimarães de Oliveira and Zoe Karakikla-Mitsakou— share first co-authorship and contributed equally to this project.

Together, and with the incredible support of the amazing Prof. Laurent Arnaud and Lena Koskina (PAN member), they reviewed 10 years of research to understand how SDH impacts lupus care—from diagnosis and treatment to mental health and long-term outcomes.

And then synthesised the literature and proposed solutions for every step of the patient pathway.

🥇 This is a milestone for co-produced research in lupus—and we can’t wait to share more with you in the coming weeks.

🔄 Help us by sharing this month's posts, and let’s make lupus care more equitable.

Don't forget to read the article! https://t.co/OXq9YGUddD

Adres

Rue D'Egmont 11
Brussels
1000

Website

http://lupus-europe.org/

Meldingen

Wees de eerste die het weet en laat ons u een e-mail sturen wanneer LUPUS EUROPE nieuws en promoties plaatst. Uw e-mailadres wordt niet voor andere doeleinden gebruikt en u kunt zich op elk gewenst moment afmelden.