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 […]
Alain CornetThe non-profit organisation ClAIR which groups lupus, arthritis and scleroderma associations (among them our French-speaking Belgian member) is organising a virtual congress from tomorrow, 30th March 2018, to 13th April included. LUPUS EUROPE will have a virtual stand in the congress. For more information, please see the press release: virtual congress CLAIR The congress is […]
Alain CornetLUPUS EUROPE was present once again at this year’s PARE conference, which was held from 16th-18th February in Brussels. PARE provides an opportunity to meet with other patient organisations who are members of the PARE network, to hear the latest updates on some of the programmes, to influence PARE’s priorities for the next year, and […]
Alain CornetLUPUS EUROPE is the organisation that brings 26 national lupus groups from all over Europe together. To better include all countries in its activities and work, it is opening up a number of interesting volunteering opportunities for members of our national groups. There is no need to be a Lupus Expert, all that is […]
Alain CornetLUPUS EUROPE BECOMES FIRST ASSOCIATE MEMBER OF SLEuro, the European Lupus Society We are very proud to announce that LUPUS EUROPE has just become the first Associate member of SLEuro, the European Lupus Society. SLEuro is a voluntary and non-political association with social and philanthropic purposes that promotes scientific research and information with regard to […]
Alain CornetAn ERN (European Reference Network) ReCONNET Survey on awareness and knowledge of Clinical Practice Guidelines in rare and complex connective tissue disorders will be open until 10th February 2018. These surveys provide vital information to the doctors and researchers setting guidelines for our care. This survey can be filled in by patients or their families […]
Alain CornetOn December 6th Katharine Wheeler participated in the closing conference for EPF’s campaign on Access to Healthcare for All. At the conference EPF presented their Roadmap for Universal Health Coverage for all. Katharine was invited to speak as a patient organisation representative and stressed the importance of leaving no-one behind if we want to achieve […]
Alain CornetThe LUPUS EUROPE annual convention has just come to a close. Hosted in Milan by Lupus Italy on the occasion of their 30thanniversary, the convention was an inspiring event centred around the theme of “pain, fatigue and stress”, with Dr Chiara Tani as a key note speaker. Benefitting from the Italian Lupus Clinic experience, we […]
Alain CornetMy first year with Lupus Europe – Sara Badreh Sara was elected to LUPUS EUROPE’s Board of trustees last October. Here is how she describes her first 8 months as a LUPUS EUROPE trustee: After an induction with the various trustees and learning more about LUPUS EUROPE in general, my first big conference was the […]
Alain CornetSome great news from Lupus UK – Janine, LUPUS UK National Office, organised 5 Runners in the Virgin London Marathon, 23rd April, with £4,290 being raised for LUPUS EUROPE. THANK YOU for your great work, Janine! Pictured below are Ed and Charlotte. Well done to you both and the other runners! For more information on […]
🤩 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
f.mtr.cool/iyctvzvvtj
1 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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