Alain CornetDid you know? Lupus is a Rare Disease! Lupus is rare, but not for us! Come and join us working on our vision: A fulfilling life for all people with Lupus in Europe until we have reached a world without Lupus What is a rare disease? It changes from country to country, but in Europe […]
Alain CornetWe would very much like to share some news with you! If you are a Lupus Europe member or potential member, volunteer or potential volunteer, or simply a member of the patient community interested in the activities of LUPUS EUROPE, join us on February 17, 2020 at 20:00 Paris time. On the agenda:– Introduction of […]
Marisa Costa20th annual European Congress of Rheumatology took place in Madrid in June 2019. The Congress was hosted by the European League Against Rheumatism (EULAR) and jointly organised with the Paediatric Rheumatology European Society (PReS). There were 14,500 attendees from 120 countries and the scientific programme included presentations from 4,900 abstracts submitted. Three Trustees attended the […]
Alain Cornet30 Years ago, on May 26, 2019, LUPUS EUROPE’s Constitution (then under the name of ELEF) was signed… The European Lupus Federation was born. as we celebrate this anniversary, we asked current and past Chairs to reflect on those years in support of People living with lupus in Europe. Yvonne Norton, Chair from 2002 […]
Alain Cornet“INTEGRATing patient reported outcomes, clinical data and quality indicators to physician drive data in clinical management of chronic rheumatic diseases: the paradigm of Systemic Lupus Erythematosus” You may recall a request from Lupus Europe, on behalf of the Integrate Project, to complete an on-line survey. Over 750 people completed the questionnaire which is a fabulous […]
Alain Cornetin only 2 days, the INTEGRATE and ERN ReCONNET surveys will be closed. Yet, we miss feedback from several countries, and only have 1 or 2 answers from others. It would really help our understanding of lupus and the interactions with Doctors if we had more answers from more locations. please help us gather that […]
Katharine WheelerThe LUPUS EUROPE 2018 convention is underway in Leuven, Belgium and among the serious speeches on medical and psychological topics, we were delighted to be presented the beautiful (and very creative) word cloud entries in the Kick Lupus competition. All in all there were 35 entries to the competition, a great response! The judges on […]
Alain CornetIn 1989, LUPUS EUROPE (then named ELEF)’s first convention took place near Brussels, in the historical city of Leuven. 29 years later, LUPUS EUROPE 2018 annual convention will once again take place in Leuven, and we are looking towards a record attendance with already 41 registrations confirmed. As the convention unfolds, we will make available […]
Alain CornetToday is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals. Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from […]
Alain CornetWe at LUPUS EUROPE wish you all a great World Lupus Day, full of hope and awareness! For this we have created a little animated video about LUPUS EUROPE. Please feel free to share! [wpvideo ILoguQxs] We would also like to repost a video made a couple of years ago about the importance of World […]
✅ For the first time a colleague has tested #COGNILUP entirely, in order to provide me with feedback. After so many hours of hard work it feels truly amazing to see that everything is working well, from the test itself to the secure transfer of results to the physician 👍
Could #anifrolumab be a game-changer for neuropsychiatric #Lupus? 🧠 💉
Our new review in @FrontiersIn dives into the clinical rationale and case-based evidence for targeting Type I Interferon in NPSLE patients.
🔗 https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2026.1750071/full
#SLE #NeuroImmunology
📣 Upcoming @ern_reconnet Webinar!
➡️ “What is the added value of triple therapy in lupus nephritis”
🗓 11 March
⏰ 4 p.m. CET (i.e., Paris).
🎙 Speaker: Dr Antonis Fanouriakis
🎙 Moderators: Prof. Matthias Schneider & Zoe Karakikla-Mitsakou.
Register https://us06web.zoom.us/webinar/register/WN_41Lc9osLQ6m7nOuJGGWnHw#/registration
🥰 Proud to see our Vice Chair & Secretary @AnnemarieS66 sharing her lived experience with cutaneous lupus for @ERN_Skin in the context of #RareDiseaseDay, helping raise awareness of skin involvement in #lupus.
https://jardin-ern.eu/patient-story/annemaries-story/
✅ After ~200h of work, how far have I been able to take #COGNILUP?
➡️ Online platform to assess #cognition in systemic #Lupus
➡️ 12 different #neuropsychological tests with gaming
➡️ Assessment of stress, depression, anxiety, pain, fatigue sleep issues
➡️ Patient & doctor modes
We are excited to share our newly released Scientific Programme for #EULAR2026, bringing together innovation, collaboration and the latest evidence shaping the future of rheumatology and patient care.
✨ Access the full programme: https://pulse.ly/3ldgscb7pq
#Rheumatology #Congress
🚨 New publication alert: @eular_org recommendations for the management of systemic lupus erythematosus with kidney involvement– 2025 update.
Why this matters from a patient perspective👇
😃 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! 👇
https://www.facebook.com/LupusEurope/videos/1940376426515031
🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life.
💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being.
🚨In addition to lupus, overlapping conditions such as Sjögren’s disease and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy.
💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).
‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care.
🔊 And that is why, on this #EuropeanSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-being
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📣 Upcoming ERN RECONNET Webinar on Lupus Nephritis!
➡️ “What is the added value of triple therapy in lupus nephritis” ⬅️
🗓 11 March 2026
⏰ 4:00 p.m. CET (i.e., Paris time).
🎙 Speaker: Dr Antonis Fanouriakis
🎙 Moderators: Prof. Dr Matthias Schneider & Zoe Karakikla-Mitsakou, General Secretary of Lupus Europe.
Lupus nephritis remains one of the most serious complications of systemic lupus erythematosus, and treatment strategies continue to evolve as new evidence emerges.
🔎 This webinar will explore:
• The scientific rationale for triple therapy.
• Current clinical evidence.
• What this may mean for outcomes in lupus nephritis.
Whether you are a healthcare professional, researcher, or patient, this session is not to be missed!
Register now! us06web.zoom.us/webinar/register/WN_41Lc9osLQ6m7nOuJGGWnHw#/registration
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🥰 Proud to see our Vice Chair & Secretary Annemarie sharing her lived experience with cutaneous lupus for ERN Skin in the context of #RareDiseaseDay, helping raise awareness of skin involvement in #lupus.
🙏Thanks to ERN Skin for helping us raise awareness of skin involvement in lupus.
💜And huge kudos to Annemarie for her tireless work and commitment to improving care and awareness for people living with lupus and skin involvement. We are grateful for everything you do!
Read her inspiring story now!
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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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