Lupus Europe had its annual Convention from November 26-29. We were supposed to all meet in Bratislava, Slovakia, but because of the times we had to change everything into a Convention in the clouds instead. We chose to see this as an opportunity to meet with friends from all around the world, who normally cannot travel to our Convention. Many of our sessions were livestreamed on our Lupus Europe Facebook page, which turned out to be a huge success! At the moment our Convention posts have reached almost 33.000 people around the world!

This year has been marked by the Coronavirus, but we didn´t want a Convention to stand in its shadow. That’s why we had a pre-Convention session about Lupus and Covid with Dr. Pedro Machado, who is an Associate Professor & Consultant Rheumatologist at University College London (UCL) and University College London Hospitals (UCLH), in London, UK. His research interests include the investigation of new therapeutic strategies and the assessment and prediction of outcomes in rheumatic diseases, with a focus on Myositis and Spondyloarthritis. More recently he has developed an interest in COVID-19 and its impact on patients with rheumatic diseases. He is the Chair of the EULAR Standing Committee of Epidemiology and Health Services Research (SCEHSR), and a member of the “EULAR COVID-19 Database” and “COVID-19 Rheumatology Alliance” Steering Committees. Dr. Machado gave us a lot of information about Covid-19 and autoimmunity and answered a lot of questions.

On November 27, we started the day with a review of our 2020 achievements and a presentation of our 2021 Plans. We heard from Lupus groups in the USA, Latin America, Russia, Mauritius and Indonesia. We have much to learn from each other and not least many ways we can collaborate in the future.

Even though we had to meet virtually we still believe it´s important to socialise. We tried to achieve this by having meet and greet sessions after our programme on both the 27th and the 28th. It was really great to talk with all our “old” friends and meet some new ones too!

On the 28th we had a session with Prof. Laurent Arnaud, who is a professor of Rheumatology at the Department of rheumatology, University Hospitals of Strasbourg and French National Reference Center for Rare Auto-immune diseases. His main research interests focus around the development and systematic evaluation of biological and immunomodulatory treatments for systemic diseases, with particular interest in the pathogenesis, diagnosis, and treatment of Systemic Lupus Erythematosus and the antiphospholid syndrome. In this session he gave us an elaborate overview of Lupus in 2020 and answered all the questions about Lupus that we never dared ask before.

Later that day our members got the chance to meet some of the partners that Lupus Europe collaborates with on a regular basis. Organisations like EPF, FESCA, ERN ReCONNET, Eurordis, Sjögren Europe and PARE are great resources of information, help us promote the cause of people with autoimmune diseases and influence the European Commission.

We had two closing lectures as parallel sessions on Sunday the 29th. The first parallel session was led by Dr. Meelad Habib about Skin and aesthetic care. Dr Meelad Habib, a young very involved dermatologist, talked about the different presentations of skin. He explained three types of Skin Lupus: acute, subacute and chronic skin Lupus and two very rare skin Lupus: Chilblain and Profundus. He pointed out the characteristics of skin Lupus. He showed a special skin Lupus case (Profundus). He treated it by filling up a dimple caused by Lupus Profundus with the patient´s own body fat. He pointed out that this, or any other cosmetic surgery can only be done, when the patient has an inactive Lupus, and the treatment is done by a multidisciplinary team. He also showed the advice for protection. After the presentation Dr. Habib answered all questions, some of which he couldn’t answer because more study should be done. He suggested one of the questioners to ask the Dermatologist in her/his own hospital.

The second parallel session was by Prof. Richard Furie MD, Chief of the Division of Rheumatology at Northwell Health, New York, is a Rheumatologist whose activities for the last several decades have focused on patient care, physician education, and clinical research in the area of anti-rheumatic drug development. He led us on a journey through the immune system of a Lupus patient and the way new research tries to solve the riddle of the disease. This was a very complex and extremely interesting session, where prof. Furie tried to give us his expectations for the future and answered a ton of great questions from the audience.

Thank you to everyone who joined us in the clouds! All in all, we had a wonderful Convention, but we are really looking forward to seeing you all face-to-face next year in Bratislava! Remember that many of the sessions are still available on the Lupus Europe Facebook page!

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💧 You’ve probably heard about “liquid biopsy”, a promising concept in lupus research.

But do you actually know what it means?
And why is everyone talking about it?

🤔 Could it help detect lupus nephritis and keep track of how it evolves using less invasive methods?

In this short video from our #ELM2026 series, Dr Andrea Fava breaks it down in a clear and patient-friendly way.

🎥 Watch the video and find out!

youtu.be/GnRbBK7x5hs?si=DzGfLGNW0tp_UMn-

🚨 Don't miss out and visit the #ELM2026 playlist with all videos in the "Video on Demand" section of our website! www.lupus-europe.org/videos-on-demand/

🙏 Thank you, Dr Andrea Fava, for your generosity in taking the time to share your knowledge in such a clear and accessible way, helping bring complex medical information closer to people living with lupus.
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💧 You’ve probab

📅 𝗠𝗮𝗿𝗸 𝘆𝗼𝘂𝗿 𝗰𝗮𝗹𝗲𝗻𝗱𝗮𝗿❗

🤩 Lupus Europe is excited to invite you to a unique event on World Lupus Day:

🧑‍💻 “Fertility, family planning for young lupus patients”

🚀 𝗔 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝗼𝗿𝗴𝗮𝗻𝗶𝘀𝗲𝗱 𝗮𝗻𝗱 𝗹𝗲𝗱 𝗯𝘆 the Lupus Europe 𝗬𝗼𝘂𝘁𝗵 𝗚𝗿𝗼𝘂𝗽.

📆 10th of May.
🕖 19:00 h CET.

🙌 A space dedicated to discussing issues that impact young people, by young and for young people.

This event is a tremendous opportunity to connect, learn, and share experiences related to lupus from the perspective of young people.

👩‍⚕️ Joining us will be Prof Laura Andreoli, who will answer your questions and engage in meaningful conversation with Lynette, Makya, Marina and Rita from the Lupus Europe Youth Group.

Moderated by our Chair, Jeanette Andersen.

‼️Register now by sending an e-mail to secretariat@lupus-europe.org‼️
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📅 𝗠𝗮𝗿�

🌍 This month in our #1Month1Study campaign, we highlight our “Living with systemic lupus erythematosus in 2020: a European patient survey”, published in Lupus Science & Medicine.

This large-scale study, conducted by Lupus Europe was led by Alain Cornet, Jeanette Andersen, Kirsi Myllys, Angela Edwards with the incredible support of Prof. Laurent Arnaud. The study analysed data from 4,375 patients across 35 European countries, providing one of the most comprehensive overviews of the burden of SLE in Europe from the patient perspective.

✅ Key findings include:

•⁠ ⁠A median diagnosis delay of 2 years, highlighting persistent gaps in early recognition.
•⁠ ⁠A high symptom burden, with a median of 9 symptoms per patient.
•⁠ ⁠Significant impact on education, employment, and daily functioning.
•⁠ ⁠Marked inequalities in access to care across countries.

📌 These data underline the importance of integrating the patient perspective into clinical practice, research, and health policy to improve outcomes in this complex disease.

doi.org/10.1136/lupus-2020-000469

😃 Stay tuned as we break down these findings throughout the month and explore what they mean for people living with lupus across Europe.

This study would not have been possible without the active support and dissemination of Lupus Europe National Members across Europe. A huge thank you to all National Members and to all who supported and disseminated the study, for making this possible for the lupus community.
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🌍 This month in o