Alain CornetWe are currently at the Eular PARE congress in Dublin and delighted to report that our World Lupus Day poster has been very well received. Here are some of the comments, among many: “Very evocative”, “A really strong message”, “It really talks to me of control, not a question of being ‘friends’ with the wolf […]
Alain CornetIf you are a member of one of LUPUS EUROPE’s member organisations and are interested in getting more involved as a patient advocate – spreading awareness, attending events, working on specific projects… we would love to hear from you. Even if you can only offer a little of your time, your contribution could make a […]
Alain CornetInterview with Jan Geisler, director of EUPATI, on the Patients’ Academy. He answers questions such as: “What is the goal of EUPATI?” “Why did you feel it was necessary to create such an academy?” “What is the profile of the students enrolled in the EUPATI course?” “What will they (the students) learn?” To view the […]
Alain CornetWe’re delighted to share a really great video interview of three patient advocates telling us more about why they get involved. The video was made during the Eyeforpharma event in Barcelona and stars our very own Nuria! To view the video please click here.
Alain CornetThe 10th and 11th of May 2015, the Immunopathology and Medicinal Chemistry laboratory of the CNRS and the University of Strasbourg, Faculty of Medicine will organize the first French conference dedicated exclusively to Lupus. Held in Strasbourg, France, the conference registration is free for patients, who just need to sign-up. The message from the organizers, professors Sylviane […]
Alain CornetLupus Europe will be attending the following: EPF WE CARE – Final project meeting EUPATI – Taking off in your country – An interactive Workshop on Implementing in your country Eular PARE annual European conference – Members can read Blanca Rubio’s report from last year by following this link
🤩 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
0 CommentsComment on Facebook
#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
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/
0 CommentsComment on Facebook
