Alain CornetWhat does quality of healthcare mean for you? Take the EPF survey! Deadline: 31st May 2016 Quality of healthcare is at the heart of European Patients’ Forum’s work. EPF is conducting a survey which aims to explore the perceptions of patients about what “quality” means for them, and what matters most in quality of care. Please note […]
Alain CornetThis week, our marathon hopeful, Andreas is running for France’s two lupus associations. This is a great opportunity to highlight a couple of World Lupus Day initiatives taken by these two associations. AFL + chair, Marianne Rivière, was interviewed for “pourquoi docteur”. You can find the full interview (in French) here. Among other activities planned […]
Alain CornetWhen I got my lupus diagnosis in 2011 I was a very active young woman with a teaching job and on my way to study for a PHD at Aarhus university. I have a master’s degree in German and Philosophy and I loved teaching. I used to be a fitness instructor during my studies and […]
Alain CornetFor World Lupus Day, Anne Charlet, vice chair of LUPUS EUROPE, was interviewed by MedTech. When Anne Charlet’s teenage daughter complained of extreme fatigue, she thought it was just end-of-school year tiredness or anaemia. But a precautionary blood test that revealed an unusually low platelet count led to a completely unexpected diagnosis several months later: […]
Alain CornetMy Lupus story doesn’t start in 1993 with an SLE diagnosis, but eight years earlier in 1985, when at the age of 22 I got pneumonia for the first time. O spent two weeks in hospital with a horde of doctors around my bed wondering why antibiotics weren’t working. The oldest doctor mentioned that I […]
Alain CornetWhen it was first suggested that I write a patient story for Lupus Europe, I have to say that I felt a little uncomfortable. Firstly, I’m an intensely private person and have so far never wanted to write about myself or write a blog. Secondly my ‘lupus’ is relatively mild (in the medical sense rather […]
Alain CornetI met my Lupus on a sunny day of April 2003 when I was 23 years old. A year ago, I was hospitalized because I fainted with seizures. At the time, the doctors told me that anyone can have such episodes once or twice during their life. However, a neurologist in training thought that I was […]
Alain CornetMy story – by Yvonne from the Netherlands On 6 July 2004, I woke up with a tremendous pain in my right hand. Because I also had a slight rash, my GP immediately referred me to a dermatologist. He examined me and referred me to a rheumatologist because he had a hunch what might be […]
Alain CornetFor World Lupus Day, we have collected a few patient stories which we hope you will enjoy. If you have a story to tell, feel free to get in touch and send your story to katharine@lupus-europe.org! All stories will remain visible on this page of the blog. My life with lupus – living to the […]
Alain CornetHere are a few pics from runs Andreas has taken part in so far… And, once again, a new post has been added to Andreas’ page. To read all about what he’s been doing so far, click here.
#EULAR2026 is around the corner!
🦋Lupus Europe plays a significant role in this year's Congress, with a diverse range of exciting topics and great participation.
✅ Are you going to @eular_org? Let's connect! Come to our booth and say hi!
Booth O1
Capital Suite Foyer, Level 3
✅ 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
🎉 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!
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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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