Alain CornetLUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire […]
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 […]
🦋 Upcoming @ern_reconnet webinar!
“CAR-T therapy in #SLE: explained to the patient”
😊 With Prof. Schett as guest speaker.
Moderated by Prof @MartaMartamosca & @Jeanette_Lupus, our Chair & ePAG representative of the ERN ReCONNET
🔗 Register now ⬇️
Register now for the 🆕@ern_reconnet #webinar “CAR-T Therapy in Systemic Lupus Erythematosus (SLE): Explained to the Patient” with Prof. Georg Schett, moderated by Prof. Marta Mosca and the ePAG Jeanette Andersen.
🗓️May 13th - 16 CET
✍️Registration is: http://rb.gy/s18q03
Celebrating @LupusEurope on #WorldLupusDay - find your #Lupus community and supporting #LupusAwareness around the world.
❤️Thank you for your support on this day & for ⬆️ awareness of the potential impact lupus can have.
However, there's something 🗝️that we also need to show.
🦋Lupus is an invisible illness with many faces. Let’s close #WorldLupusDay with our hopes,laughter & enthusiasm for life
1/3 💜 Thank you to everyone who joined our Youth Group webinar on fertility, family planning & lupus this #WorldLupusDay.
❤️ A special thank you to Prof. @lauraandreoli80 for leading such an important discussion on reproductive health and lupus care.
#MakeItCount. Thread ⬇️
It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLE's 🔝dangerous & frequent complications.
Routine checkups & treatment make it possible for 60–70% of patients to achieve complete or partial remission
#WorldLupusDay
#MakeItCount
Despite significant improvements in diagnosis delay & treatment strategies,the burden of #SLE remains⬆️.
Association between diagnosis delay, disease activity & burden on daily life in patients with #lupus by @Lupusreference et al: https://buff.ly/3pgBsrL
#WorldLupusDay
#Lupus100
#Lupus is an autoimmune disease that affects nearly 500,000 people in Europe and over 5 million people in the world.
It affects not only patients but also their loved ones.
Let's raise awareness of the importance of an early diagnosis
#WorldLupusDay
#MakeItCount
#Lupus100
🚨 #Lupus is a complex and heterogeneous systemic autoimmune disease in which the body's immune system attacks its own tissues and organs, causing inflammation and damage in any part of the body
Visit #Lupus100 & #LupusGPT for more!
#MakeItCount
#WorldLupusDay
#MakeLupusVisible
🦋 Upcoming ERN ReCONNET webinar!
“CAR-T therapy in Systemic Lupus Erythematosus (SLE): explained to the patient”
😊 The webinar will feature Prof. Georg Schett as guest speaker and will be moderated by Prof. Marta Mosca and Jeanette Andersen, Chair of Lupus Europe and ePAG representative of the ERN ReCONNET SLE disease group.
📅 Date: 13 May 2026
⏰ Time: 16:00 CEST
💻 Format: Online webinar
This session is designed to help make complex scientific information more understandable for people living with lupus, patient advocates, healthcare professionals and anyone interested in SLE.
🔗 Register here:
us06web.zoom.us/webinar/register/WN_SE65ZaxFT9isuoXi0O6o8w#/registration
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🦋 #WorldLupusDay is coming to an end!
❤️ Thank you all for the support you have shown throughout this important day, as people around the world have come together to raise awareness of the impact lupus can have.
🌈 At Lupus Europe, we believe there is something very important we also need to show the world: our vitality, our energy, and our will to enjoy life, take part, contribute, and be heard.
🌟 Our vision is a fulfilling life for all people with lupus in Europe, until we reach a world without lupus.
😃 We work hard. We show up. We support each other. We all live with lupus in different ways, even if our amazing Lupus Europe family sometimes seems to forget about it when we are at an event, in a meeting, or working together for the organisation.
🦋 Lupus is an invisible illness with many faces. Let’s close this #WorldLupusDay with our hopes, our laughter and our enthusiasm for life.
💬 That is why today we also want to remind you of our #MakeItCount campaign and the 𝐋𝐮𝐩𝐮𝐬 𝐂𝐨𝐧𝐬𝐮𝐥𝐭𝐚𝐭𝐢𝐨𝐧 𝐂𝐚𝐫𝐝𝐬.
These cards are designed to help people living with lupus prepare for medical appointments, organise their thoughts, identify what matters most, and make consultations more focused and meaningful.
🌺 Visit our website, download the Lupus Consultation Cards, and use them at your next appointment.
www.lupus-europe.org/lupus-consultation-cards/
Because your priorities, questions, and needs deserve a place in every consultation.
Let’s #MakeItCount.
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💜 Thank you to everyone who joined our Youth Group webinar on fertility, family planning & lupus today!
Important conversations like these help tackle fears, misconceptions & unanswered questions around lupus and reproductive health.
🦋 Don't forget to include this topic in the Lupus Consultation cards in your next appointment!
#MakeItCount. Check out this new tool that helps patients prepare for consultations and improve communication with healthcare professionals.
Available in many languages!
📌 Download here:
www.lupus-europe.org/lupus-consultation-cards/
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