Alain CornetFor World Lupus Day, we have collected a few patient stories which we hope you will enjoy. If you have a story to tell, feel free to get in touch and send your story to katharine@lupus-europe.org! All stories will remain visible on this page of the blog. My life with lupus – living to the […]
Alain CornetHere are a few pics from runs Andreas has taken part in so far… And, once again, a new post has been added to Andreas’ page. To read all about what he’s been doing so far, click here.
Alain CornetMay 10th – World Lupus Day “Lupus knows no boundaries”. Special online events global campaign Please go to www.worldlupusday.org for further information. 11th May – EPF Access to healthcare workgroup meeting in Düsseldorf. Katharine Wheeler attending. June 8-11th – EULAR Congress, London, UK. This year LUPUS EUROPE and LUPUS UK will share a stand in EULAR […]
Alain CornetAs we approach World Lupus Day again, it’s a good time to share the video made last year about the importance of World Lupus Day. Feel free to share! [youtube https://www.youtube.com/watch?v=ae14ZLCdbqg&w=560&h=315]
Alain CornetWorld Lupus Day is just one week away… The World Lupus Federation which encompasses the LFA, LUPUS EUROPE and other world Lupus organisations, has set up a website specially dedicated to World Lupus Day. On the site you can find out more about different activities throughout the world, download a Lupus toolkit and sign the petition […]
✅ 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
2 CommentsComment on Facebook
📣 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
0 CommentsComment on Facebook
🥰 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!
This content isn't available right now
When this happens, it's usually because the owner only shared it with a small group of people, changed who can see it or it's been deleted.0 CommentsComment on Facebook
🚨 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
0 CommentsComment on Facebook
