Alain CornetHello again – now a note about day 2 at the IAPO GPC 2016! (International Alliance of Patients Organisations) Global Patients Conference 2016) Sunday morning was devoted to UHC (Universal Health Coverage). We had two presenters, from the WHO (World Health Organisation), Nittita Prasopa-Plaizier and Mario Ottigilo. UHC is a global project with the goals : health […]
Alain CornetThis week the training begins… dedicated to Denmark – click on Run with Andreas for more.
Alain CornetWe have a new page on the LUPUS EUROPE blog, in honour of an inspiring young man who has decided to run with and for LUPUS EUROPE. To follow his story each week simply click on the tab ‘Run with Andreas’. Week 0/24 Greatest life Challenge, till the next one! A few months ago […]
Alain CornetLUPUS EUROPE’s annual convention will be held in Würzburg, Germany this year from 28th September (afternoon welcome and registration) – 02 October 2016 (closing after morning sessions). The German Lupus Association is celebrating their 30th anniversary this year and is looking forward to welcoming us to Germany for the occasion. More information coming soon…
Alain CornetHI! from the IAPO (International Alliance of Patients Organisations) Global Patients Conference 2016! I’m representing Lupus Europe at this amazing conference! From www.iapo.org.uk “150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world.” My objective here was to represent Lupus Europe […]
Alain CornetPatients take universal health coverage into their own hands 150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world. Patients’ groups, academics and health organisations will meet at the 7th Global Patients Congress, from 9-11 April, to share innovative […]
Alain CornetIn one month’s time it’s World Lupus Day. For the occasion the World Lupus Federation (which reunites the Lupus Foundation of America, LUPUS Europe and other Lupus federations around the world) has set up a petition, addressed to the World Health Organisation, requesting that Lupus become a priority, enabling patients to be diagnosed and treated as quickly […]
✅ When doctors recommend a tool, it is because they see their potential.
👩⚕️ In this video, Dr @sarahdyball1 introduces the Lupus Consultation Cards.
🤝 Co-created by doctors and patients, they help patients prepare for their consultation.
https://www.lupus-europe.org/lupus-consultation-cards/
#MakeItCount
🔴 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
🎉 In six days, we will be at #EULAR2026!
If you haven't heard of EULAR before, it's Europe's largest rheumatology congress 😃.
🌍 Every year in June, EULAR brings together over 13,000 researchers, clinicians, and patient advocates from more than 130 countries, with 170+ scientific sessions.
🦋 Lupus Europe will be there, and we'll be bringing you the latest on lupus from the congress floor.
🎙️ Not only that! Lupus Europe will be an active part of the congress! As in previous years, some of our Board and PAN members will be presenting posters and abstracts, chairing sessions, and taking the stage as speakers.
👀 Stay tuned!
0 CommentsComment on Facebook
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/
0 CommentsComment on Facebook
☹️ 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
0 CommentsComment on Facebook
🗨️ 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
2 CommentsComment on Facebook
