Alain CornetWorld Lupus Day is just one week away…
The World Lupus Federation which encompasses the LFA, LUPUS EUROPE and other world Lupus organisations, has set up a website specially dedicated to World Lupus Day. On the site you can find out more about different activities throughout the world, download a Lupus toolkit and sign the petition asking for lupus to be made a priority for the WHO (World Health Organisation).
🇵🇹What a week at #ELM2026!
You may have noticed Lupus Europe was quiet on social media… simply because we were fully involved in the meeting.
🔹12 Fishbowl Chairs
🔹9 abstracts supported
🔹Our Chair, @Jeanette_Lupus, at opening & closing
🔹6 co-chairs
🔹3 session interventions
🤩 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/
🚨 Today is #WorldKidneyDay! And we are supporting the World Kidney Day campaign.
People with kidney disease are among the most vulnerable people in an emergency because of their ongoing need for consistently coordinated care, which is often lifelong and involves complex ongoing treatment.
🦋 It is estimated that about 40% of #SLE patients will suffer from #lupus nephritis: one of the most dangerous and frequent complications of #SLE. Routine check-ups and early detection of symptoms are key for getting an early diagnosis.
#kidneyhealthforall
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🇵🇹 What a week at the European Lupus Meeting 2026 in Lisbon!
You may have noticed something unusual…
🤫 Lupus Europe has been very quiet on social media throughout the Congress.
The reason? We were way too busy contributing, participating and engaging throughout #Lupus2026!
Here are just a few highlights of Lupus Europe’s involvement:
🔹 12 Fishbowl Chairs
🔹 9 abstracts supported by Lupus Europe
🔹 Our Chair, Jeanette Andersen, speaking at both the opening and closing ceremonies
🔹 6 Lupus Europe co-chairs at scientific sessions
🔹 3 interventions in sessions and interactive workshops
🚀 Beyond the scientific programme, the meeting was also completely full of valuable discussions and working meetings for ongoing projects that we are excited to share with you soon.
Over the coming weeks, we will share more about what happened in Lisbon, so keep an eye out for news!
📅 Meanwhile, don’t miss our ELM 2026 Recap Webinar as viewed by our PAN members, who were there!
🗓 16 March
⏰ 19:00 CET (i.e. Paris time)
💻 Zoom
Register now, to hear the key takeaways and highlights from this important European meeting.
Just email: secretariat@lupus-europe.org
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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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