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 […]
🔴 According to Lupus Europe’s 2024 Swiss Knife Survey, joint pain/swelling was reported by 72.8% of people living with #lupus, & 44.6% said it stopped them from living life to the fullest.
🩺 In a lupus consultation, symptoms matter. But so does their impact.
#AiArthritisDay
🗨️Lupus affects men, too! And its impact can be different, both mentally & physically.
The Lupus Consultation Cards for men help prioritise what matters most & support more focused consultations.
🌍Available in 18 languages
📥Free download: https://www.lupus-europe.org/lupus-consultation-cards/
#MakeItCount
✅ 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.
𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a 𝗻𝗲𝘄 𝘁𝗼𝗼𝗹, 𝗿𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗲𝗱 𝗯𝘆 𝗹𝘂𝗽𝗼𝗹𝗼𝗴𝗶𝘀𝘁𝘀❗
✅ When doctors recommend a tool, it is because they see how it can support real conversations in the clinic.
👩⚕️ In this video, Dr Sarah Dyball introduces the Lupus Consultation Cards.
🤝 These cards were created through collaboration between doctors and patients to help people living with lupus 𝗽𝗿𝗲𝗽𝗮𝗿𝗲 𝗳𝗼𝗿 𝘁𝗵𝗲𝗶𝗿 𝗺𝗲𝗱𝗶𝗰𝗮𝗹 𝗰𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻𝘀.
They can support patients in:
✔️ organising what they want to discuss
✔️ identifying their main concerns
✔️ preparing their top questions
✔️ making the consultation more focused
😃 For doctors, the cards can help them understand faster what matters most to the person in front of them.
💜 A simple tool. A better consultation.
👉 Download or fill in the cards online and take them to your next doctor's appointment and #MakeItCount:
www.lupus-europe.org/lupus-consultation-cards/
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☹️ Does joint pain affect your daily life? You are not alone.
💁♀️ According to Lupus Europe’s 2024 Swiss Knife Survey, joint pain and/or swelling were reported by 𝟳𝟮.𝟴% 𝗼𝗳 𝗽𝗲𝗼𝗽𝗹𝗲 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗦𝗟𝗘. It was also one of the symptoms 𝗺𝗼𝘀𝘁 𝗹𝗶𝗸𝗲𝗹𝘆 𝘁𝗼 𝘀𝘁𝗼𝗽 𝗽𝗲𝗼𝗽𝗹𝗲 𝗳𝗿𝗼𝗺 𝗹𝗶𝘃𝗶𝗻𝗴 𝗹𝗶𝗳𝗲 𝘁𝗼 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹𝗲𝘀𝘁, reported by 44.6% of respondents.
🦋 #Lupus is a systemic autoimmune disease that can affect different parts of the body, including the joints.
💜 Today is World Aimmune Autoinflammatory Arthritis Day, also known as #AiArthritisDay.
It is a day to raise awareness of autoimmune and autoinflammatory diseases, such as lupus, that can involve joint inflammation.
❌ But lupus is not “just joint pain”.
‼️ Lupus can affect the whole body. That’s why it is important that symptoms such as pain, fatigue, swelling, stiffness, and their impact on daily life are discussed clearly during medical appointments.
💬 To help with these conversations, take a look at the 𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a practical tool to help people living with lupus prepare for appointments and explain what matters most to them.
Inspired by NVLE and in collaboration with ERN RECONNET, these cards are available in 19 languages (more to come!).
📥 Download them here and make your consultation count: www.lupus-europe.org/lupus-consultation-cards/
#MakeItCount
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🗨️ Lupus affects men, too! And its impact can be different from women’s, both physically and mentally.
‼️ From symptoms to how it is experienced and expressed, men living with lupus may face challenges that are not always recognised or addressed in consultation.
💁♂️ That's why we have created the Lupus Consultation Cards adapted for men: designed to help prepare for consultations, prioritise concerns, and make sure what matters most is addressed.
🌍 Available in 18 languages!
📥 Download for free and make your consultation count: www.lupus-europe.org/lupus-consultation-cards/
🟣 #MakeItCount
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😱 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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