Alain CornetToday, Tuesday, December 6th Chair Kirsten Lerstrøm, LUPUS EUROPE, was invited to address the European Parliament Interest Group on Rheumatic and Muscoskeletal Diseases (RMDs) on Patients’ Perspectives on Improving Access to Care and Therapies for People with Rare RMDs at the meeting of “Policy Issues and Challenges in the Treatment and Care of Rare Diseases”.
✅ Thank you @autoimmunitymd for the invitation to talk about challenges in #Lupus. I have the feeling that there is now a significant momentum in #SLE
- NEW treaments on their way
- NEW recommendations for rare manifestations
- LUPUS-ALERT to screen for vulnerabilities etc
😱 New kid on the block!
✅ Lupus Europe proudly presents the Lupus Consultation Cards: a tool designed to help both patients & HCPs structure consultations & support more focused discussions.
🌍 Available in 18 languages!
📥 Download: https://www.lupus-europe.org/lupus-consultation-cards/
#MakeItCount
TODAY’S @ERNReCONNET webinar at 16 CET on “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.
✍️ Register here to participate: http://rb.gy/s18q03
🟪 Consultations are short. Lupus is complex.
💫 A simple way to help patients prepare, prioritise, and support more focused discussions.
The Lupus Consultation Cards are now available in 18 languages.
🔗 Download them for free: https://www.lupus-europe.org/lupus-consultation-cards/
#MakeItCount
🦋 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 ⬇️
😱 New tool for lupus!
✅ Lupus Europe proudly presents the Lupus Consultation Cards: a tool designed to help both patients and healthcare professionals structure consultations, prioritise what matters to patients, and support more focused discussions.
Because lupus is complex, and consultation time is limited.
✔️ Set your priorities
✔️ Organise your thoughts
✔️ Focus the conversation
🌍 Available in 18 languages
📥 Download for free or fill it in online: www.lupus-europe.org/lupus-consultation-cards/
🟣 #makeitcount
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🟪 Consultations don’t always leave enough time to cover everything that matters.
😩 Symptoms, concerns, and questions can quickly become overwhelming when living with lupus.
🍀 The Lupus Consultation Cards are designed to help you come prepared, prioritise what matters, and make the most of your time with your doctor.
✔️ Set your priorities
✔️ Organise your thoughts
✔️ Focus the conversation
🌍 Available in 18 languages
🔗 Download them for free: www.lupus-europe.org/lupus-consultation-cards/
🟣 Make your consultation count.
#MakeItCount
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🦋 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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