Alain CornetFor those of you who may have missed it or who are not signed up on our mailing list, here is the link to the convention report for LUPUS EUROPE’s annual convention which was held this year from 28th September – 2nd October 2016. If you don’t currently receive our newsletters and emails and would like […]
Alain Cornet2 weeks to go, Running for Lupus Hej, Tere, Hei, Χαιρετώ, Bonjour, Hallo, Helló, Ciao, Olá, Ahoj, Hallå, Hola, Grüezi, Halló, Dia dhuit, Shalom, As-salam alaykom, Buna, Sveiki, Zdravo Many things have happened since the last blog post. As you can see in the above picture, the t-shirt design has been finalised and ordered for printing. You will […]
Alain CornetThe 18th edition of the EULAR Annual European Congress of Rheumatology is now open for registration! To find out more, click here.
Alain CornetThere has been a good response to the sunscreens survey with 2,000 respondents so far. To really make sure this survey is a good reflection of our situations, more responses are needed. Please continue to share the link in your patient network. The deadline for responses is 31st October 2016. The European Society of Cutaneous Lupus […]
Alain CornetToday is World Arthritis Day. A day being honoured by The EULAR Conference on reducing the burden of chronic diseases in the workplace for people with RMDs. The conference is focusing on identifying and discussing relevant issues related to the working environment and how to move forwards. The conference was opened by EULAR president Prof. Gerd R. […]
Alain CornetEPF publishes a guide for patient organisations on the new Data Protection Regulation The new Regulation on personal data protection (EU/2016/679) was published in May 2016 and will apply from May 2018. It provides more rights to citizens to be better informed about the use made of their personal data, and gives clearer responsibilities to […]
The LUPUS EUROPE convention has come to a close. Four intensive days of work, sharing, inspiration, education and exchange! We have all learned a lot from each other and from the wonderful speakers who shared their knowledge with us. A huge thank you goes out to our members who made this convention a great success […]
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
🚨 𝗟𝗮𝘀𝘁 𝗰𝗵𝗮𝗻𝗰𝗲❗
🙏 Help Prof @Lupusreference and his team validate the Lupus Brain Fog Severity Scale.
✅ Make lupus brain fog measurable.
⏱️ 5 minutes of your time can make a huge impact!
https://lupusresearch.limequery.org/337533?lang=en
✅ #COGNILUP is based on a series of 12 tests, assessing various aspects of #cognition relevant to the specific context of #Lupus and tailored to detect minor alterations. A series of 12 challenges to unlock the secret of the 12 golden butterflies, to improve QoL in #SLE 🦋
🚨Alcohol, recreational drugs & lupus: what are the risks?
Young people face real-life decisions that can affect their health. This Youth Group webinar offers clear, evidence-based information to help support safer, informed decisions.
Email secretariat@lupus-europe.org to join
✅ Because #neuropsychological testing is difficult to get almost everywhere in the world ⬇️ I'm developing #COGNILUP, a free online platform with multi-lingual capabilities, enabling sensitive cognition testing of #lupus patients everywhere in the world 🌏🌎🌍
✅ One more week before the end of the validation phase of the #LBFSS #brainfog score for #Lupus. If you have #SLE and have not participated yet we definitely need your help ⬇️ 15 minutes only to help us improve the recognition of #cognitive manifestations 🧠
🚨 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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😃 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! 👇
Alcohol & Drugs - Lupus
0 CommentsComment on Facebook
🚨 𝗟𝗮𝘀𝘁 𝗰𝗵𝗮𝗻𝗰𝗲❗
🙏 Help Prof Laurent Arnaud and his team validate the Lupus Brain Fog Severity Scale.
✅ Make lupus brain fog measurable.
⏱️ 5 minutes of your time can make a huge impact!
lupusresearch.limequery.org/337533?lang=en
0 CommentsComment on Facebook
