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.

08/12/2025

📢 Calling all patients!

🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with presents unique challenges that need to be addressed.

✍️ That is why we invite you to participate in the survey by EURORDIS-Rare Diseases Europe.

Your insights can make a difference and help shape future policies that support people living with this condition.

🙏 Thanks for sharing your experience!

https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm

04/12/2025

📣 LupusGPT was featured at the European Patients’ Forum (EPF) Congress in Brussels!

The EPF Congress is the largest European event dedicated to strengthening patient involvement in healthcare systems, policy and research. It brings together leading voices from the European patient community and cross-sector experts to build more resilient, inclusive and patient-centric healthcare across Europe.

💜 This year, our poster was present thanks to the work of our Chair, Jeanette Andersen, and the support of Cathrine Hjelmeset from Lupus Norway and the Lupus Europe PAN, who represented us in Brussels. We are deeply grateful for their commitment.

🙏 We would also like to express our sincere gratitude to the EPF team for their remarkable support throughout the process. Their dedication ensured that LupusGPT was fully represented at the Congress, and we truly appreciate their efforts.

🧡 LupusGPT is built by patients to provide clear, accessible and reliable information, collaboratively validated by doctors and patients, about lupus in almost any language.

Try it now: https://lupusgpt.org/

03/12/2025

🟣 Living with systemic erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.

In fact, our Living With Lupus 2020 survey reveals the profound impact can have:

🔹 57.9% of respondents said SLE negatively affected their careers.
🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.

🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.

🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.

01/12/2025

🚨TODAY!

🌟 We’re excited to share that our General Secretary, Zoe Karakikla-Mitsakou, will be presenting at the ERN RECONNET Sharing Good Practice Initiative 2025!

Don't miss this online event that will bring together professionals, researchers and patient organisations from across Europe to highlight practices that are improving care for people living with rare and complex connective tissue diseases.

🧡 LupusGPT will be featured as one of this year’s selected examples of good practice. A recognition of the essential role of patient-led innovation in improving care.

Check the programme and register for free here: https://reconnet.ern-net.eu/2025/11/24/register-now-ern-reconnet-2025-sharing-good-practice-initiative/

28/11/2025

🌟 What an incredible experience at the HMA/EMA Multi-Stakeholder Workshop on Artificial Intelligence!

Last week, we were proud to be there and even prouder of the outstanding presentation delivered by our Organisation Coach, Alain Cornet. His keynote on sparked genuine interest, thoughtful questions, and powerful discussions about how patient-created tools can meaningfully contribute to the future of AI in health.

💜 LupusGPT, a tool built by patients, is now widely used not only by people living with lupus, but also by healthcare professionals seeking clear, reliable information. Seeing it recognised and highlighted in such a high-level regulatory forum is a milestone for all of us.

🤝 A heartfelt thank you to the organisers for giving us the opportunity to showcase the potential of patient-led innovation. Your openness to including patient perspectives shows how collaboration can elevate trust, evidence, and the quality of health information across Europe.

🚀 We’re now working on the next upgrades to make LupusGPT even more robust, accessible and impactful for the lupus community.

Exciting improvements are on the way- stay tuned! In the meantime, don’t forget to visit https://lupusgpt.org/ or https://lupus100.org/ for high-quality and valid information about lupus!

26/11/2025

✅ Do you want to know more about topics like fatigue or CAR-T cells?

🎥 Now you can find all our videos in one place — directly on our website!

From expert talks and patient perspectives to research updates and event highlights, our video section brings together the content from our YouTube channel so you can watch anytime!

https://www.lupus-europe.org/videos-on-demand/

24/11/2025

🌟 Last week we were at the EULAR Conference 2025!

And we’re proud that our Chair, Jeanette Andersen, represented the European Lupus Community in Brussels.

The EULAR PARE Conference is one of the key annual events for the RMD community. A space where patient organisations, advocates, researchers and leaders come together to learn, connect and co-create better solutions for people living with rheumatic and musculoskeletal diseases.

✨ Being present in this event allows us to amplify the patient voice, shape future research, strengthen the PRP network, and work side by side with the wider European community to drive meaningful change.

🤝 Always ready to collaborate, share, and make an impact!

18/11/2025

🌟 Big news!

We are incredibly proud to announce that Lupus Europe has been invited to take part in the HMA/EMA Multi-Stakeholder Workshop on Artificial Intelligence, one of the most important European events on AI in health.

✅ Our Organisation Coach, Alain Cornet, will deliver a keynote presentation on , showcasing how artificial intelligence can support better access to reliable information for patients.

🏆 Being invited to this workshop is a major milestone! It shows that the work of Lupus Europe is recognised at the highest regulatory level and that a patient-created tool like can stand alongside institutional and industry innovations, proving the value of working with patients as equal partners.

🇪🇺 What is the EMA?

The European Medicines Agency (EMA) is the EU body responsible for evaluating, supervising and monitoring the safety, quality and efficacy of all medicines authorised in Europe. Its mission is to protect public and animal health across the EU.

Being included in this event means that is seen as a relevant and trustworthy innovation by those shaping the future of medicine regulation in Europe.

📅 The workshop will take place on 20–21 November 2025 in Amsterdam, bringing together regulators, researchers, AI specialists, patient organisations and industry leaders.

👀 You will be able to follow the event through the EMA’s website at https://www.ema.europa.eu/en/events/hma-ema-multi-stakeholder-workshop-artificial-intelligence-ai

14/11/2025

🌈 Exciting news!

🎙️ We have launched Lupus Europe: The Podcast!

A new project and a new step forward to bring our studies, projects and research to all audiences, making science clear, accessible and truly patient-friendly.

🎧 Our first episode is now live. Listen now!

https://open.spotify.com/show/3yMLxGTMYsApHzWTFrqVJr

11/11/2025

🇮🇹 Spotlight on Gruppo LES Italiano ODV!

✨ At our , our Italian member organisation presented an impressive poster showcasing their wide-ranging activities aimed at improving lupus care, awareness and patient engagement across Italy.

🎥 They continue their monthly live broadcasts, launched in 2020, where lupus specialists answer patients’ questions and clarify doubts in real time. These sessions, along with regular video interviews on social media, provide trustworthy, accessible information straight from the experts.

🏥 Gruppo Italiano LES also offers financial support to lupus clinics throughout the country, helping ensure consistent and quality care for people living with lupus.

🌻 Like many other prhanisations around the world, each year they celebrate World Lupus Day on May 10th with great energy. From press conferences and doctor–patient meetings to regional TV campaigns and beautiful purple illuminations in 17 Italian cities!

🌸 October marks their Lupus Awareness Month, featuring public events, fundraising, and the distribution of Saintpaulia violets to raise awareness and support research.

📢 Among their current projects:
1️⃣ Your Voice Matters!: A nationwide survey inviting patients to share their experiences with lupus centres, so their voices directly shape better care and services.
2️⃣ SLE is More – Il Lupus al Centro: Italy’s first campaign to certify Centres of Excellence for systemic lupus erythematosus, ensuring high standards of care across the country.

👏 A heartfelt thank you to Gruppo Italiano LES for their tireless work, creativity and passion!

04/11/2025

🇮🇸 Spotlight on Lupus Iceland!

At our , Lupus Iceland presented an inspiring poster showing why patient organisations are essential: they identify unmet needs and work towards practical solutions.

Did you know they import sun protection products, like hats & sunscreen, that are not sold in Iceland? How amazing is that? 😍

📰 Through articles in newspapers and radio interviews, they help raise public awareness about lupus and its challenges, giving visibility to the voices of patients in Iceland.

💬 They also hold monthly meetings to answer questions, share updates, and build a strong support network.

💜 And they’re working to translate into Icelandic! Making reliable information about lupus accessible to even more people across Europe.

👏 Thank you, Lupus Iceland, for your dedication and hard work. A perfect example of how important patient organisations are, and how much patients can achieve when they work together!

27/10/2025

🇧🇪 Spotlight on Lupus Belgium!

During our , several member associations presented their posters, showing the incredible work being done across Europe to support people living with lupus.

🔝 The ASBL Lupus Erythematosus Association presented their inspiring activities, all focused on informing, connecting and empowering people living with lupus across the country.

🖥️ In May, they proudly launched their new website, www.lupus.be, offering visitors reliable information and an easier way to stay connected with their community.

Did you know that our Capacity Programme supported this initiative? If you are a member of Lupus Europe and have a project that requires assistance, please send us an email and we'll be glad to help.

🧘‍♀️ Through their Yoga Workshop, they create a safe space, helping members find wellbeing- an initiative they will continue in the coming year.

📖 Their magazine, Le Lien, published two new editions this year, sharing the latest scientific advances, patient stories and perspectives on lupus, continuing to bridge knowledge and experience.

🎓 They also support therapeutic workshops, empowering both patients and caregivers through training designed to improve understanding and self-management of .

🌸 With a growing community of more than 3,000 followers on Facebook, Association Lupus erythémateux Belgique continues to build a safe space where people can stay informed, supported and connected.

📅 And on October 18th, they’ll host their Annual Day! That will focus on troublesome symptoms and new treatments- don't miss out!

💜 Congratulations to The ASBL Lupus Erythematosus Association for their ongoing commitment and creativity. You are a wonderful example of how local initiatives can make a real difference for those living with lupus.

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.