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 […]
🤩 Thank you for your support this #RareDiseaseDay!
💪 Along with organisations like @rarediseaseday and @eurordis, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌
#ShareYourColours
#rarediseaseday
👶 Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
🫀 The most serious complication of neonatal lupus is a heart condition known as congenital heart block
#RareDiseaseDay
🦋 #Lupus is a #RareDisease that affects nearly 500,000 people in Europe and over 5 million people in the world.
‼️However, lupus affects not only patients but also their loved ones. Let's raise awareness of the importance of an early diagnosis
#RareDiseaseDay #ShareYourColours
🚨 There are over 300 million people who live with a #RareDisease in Europe.
🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.
🙌Join us & show your support for #RareDiseaseDay
#ShowYourColours
Today is #RareDiseaseDay!
And we have joined @rarediseaseday campaign.
Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours
https://www.youtube.com/watch?v=7J1oTfoIOGw
✅ I have been silent these past weeks, because I was working on #COGNILUP. I'm now ready to report on the progress made so far:
- Online platform with 12 tests to explore #cognition in #lupus
- Secure data exporting
- Automated result interpreter
- Module to add new languages
😃 Throwback to the HMA/EMA Multi-Stakeholder Workshop on AI.
Watching Alain Cornet present #LupusGPT at a high-level regulatory forum confirmed something important: patient-led innovation belongs in the future of AI in medicine.
Try it now! https://lupusgpt.org/
🌍 Join us on 18 March 2026 for the WORD Day Webinar!
Our expert speakers will share valuable perspectives on early recognition and the importance of specialised paediatric treatment.
Join the webinar here 👉 https://pulse.ly/3bgcxkgz8w
#WORDDay2026
Today is rare disease day!
🚨 There are over 300 million people who live with a #RareDisease in #europe.
🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.
🔴 Some facts about #rarediseases:
1️⃣ There are more than 6000 identified rare diseases.
2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.
3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.
4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.
5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.
Along with organisations like Rare Disease Day and EURORDIS-Rare Diseases Europe, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌.
Thank you for your support on this #rarediseaseday!
#ShareYourColours
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#lupus is a #RareDisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #RareDisease in #europe.
Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease
#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website
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0 CommentsComment on Facebook
Today is #RareDiseaseDay!
And we have joined Rare Disease Day campaign.
Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours
www.youtube.com/watch?v=7J1oTfoIOGw
4 CommentsComment on Facebook
😃 Throwback to the HMA/EMA Multi-Stakeholder Workshop on Artificial Intelligence.
Watching Alain Cornet show the world what #LupusGPT really is still gives us goosebumps! 🙌
For those who still don't know this artificial intelligence tool:
💡 LupusGPT is built by patients and doctors.
🗣️ It speaks virtually any language.
💸 It’s free and anonymous- you don’t need to create an account.
📚 It is trained exclusively on a curated repository of validated documents.
🚫 It does not invent answers.
If something is not in the repository, LupusGPT will clearly say so. It will not guess. It will not generate false information.
🥹 Seeing LupusGPT presented at such a high-level regulatory forum confirmed something important:
Patient-led innovation can meaningfully contribute to the future of AI in medicine when it is built responsibly.
🔗 Try it here! lupusgpt.org/
🧠 Are medical terms confusing? Prefer shorter explanations in simple language?
Try #EasyLupus! The easy-read version of LupusGPT: easy.lupusgpt.org/
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