Alain CornetHello again – now a note about day 2 at the IAPO GPC 2016! (International Alliance of Patients Organisations) Global Patients Conference 2016) Sunday morning was devoted to UHC (Universal Health Coverage). We had two presenters, from the WHO (World Health Organisation), Nittita Prasopa-Plaizier and Mario Ottigilo. UHC is a global project with the goals : health […]
Alain CornetThis week the training begins… dedicated to Denmark – click on Run with Andreas for more.
Alain CornetWe have a new page on the LUPUS EUROPE blog, in honour of an inspiring young man who has decided to run with and for LUPUS EUROPE. To follow his story each week simply click on the tab ‘Run with Andreas’. Week 0/24 Greatest life Challenge, till the next one! A few months ago […]
Alain CornetLUPUS EUROPE’s annual convention will be held in Würzburg, Germany this year from 28th September (afternoon welcome and registration) – 02 October 2016 (closing after morning sessions). The German Lupus Association is celebrating their 30th anniversary this year and is looking forward to welcoming us to Germany for the occasion. More information coming soon…
Alain CornetHI! from the IAPO (International Alliance of Patients Organisations) Global Patients Conference 2016! I’m representing Lupus Europe at this amazing conference! From www.iapo.org.uk “150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world.” My objective here was to represent Lupus Europe […]
Alain CornetPatients take universal health coverage into their own hands 150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world. Patients’ groups, academics and health organisations will meet at the 7th Global Patients Congress, from 9-11 April, to share innovative […]
Alain CornetIn one month’s time it’s World Lupus Day. For the occasion the World Lupus Federation (which reunites the Lupus Foundation of America, LUPUS Europe and other Lupus federations around the world) has set up a petition, addressed to the World Health Organisation, requesting that Lupus become a priority, enabling patients to be diagnosed and treated as quickly […]
✅ 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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