Alain CornetDid you know? Lupus is a Rare Disease! Lupus is rare, but not for us! Come and join us working on our vision: A fulfilling life for all people with Lupus in Europe until we have reached a world without Lupus What is a rare disease? It changes from country to country, but in Europe […]
Alain CornetWe would very much like to share some news with you! If you are a Lupus Europe member or potential member, volunteer or potential volunteer, or simply a member of the patient community interested in the activities of LUPUS EUROPE, join us on February 17, 2020 at 20:00 Paris time. On the agenda:– Introduction of […]
Marisa Costa20th annual European Congress of Rheumatology took place in Madrid in June 2019. The Congress was hosted by the European League Against Rheumatism (EULAR) and jointly organised with the Paediatric Rheumatology European Society (PReS). There were 14,500 attendees from 120 countries and the scientific programme included presentations from 4,900 abstracts submitted. Three Trustees attended the […]
Alain Cornet30 Years ago, on May 26, 2019, LUPUS EUROPE’s Constitution (then under the name of ELEF) was signed… The European Lupus Federation was born. as we celebrate this anniversary, we asked current and past Chairs to reflect on those years in support of People living with lupus in Europe. Yvonne Norton, Chair from 2002 […]
Alain Cornet“INTEGRATing patient reported outcomes, clinical data and quality indicators to physician drive data in clinical management of chronic rheumatic diseases: the paradigm of Systemic Lupus Erythematosus” You may recall a request from Lupus Europe, on behalf of the Integrate Project, to complete an on-line survey. Over 750 people completed the questionnaire which is a fabulous […]
Alain Cornetin only 2 days, the INTEGRATE and ERN ReCONNET surveys will be closed. Yet, we miss feedback from several countries, and only have 1 or 2 answers from others. It would really help our understanding of lupus and the interactions with Doctors if we had more answers from more locations. please help us gather that […]
Katharine WheelerThe LUPUS EUROPE 2018 convention is underway in Leuven, Belgium and among the serious speeches on medical and psychological topics, we were delighted to be presented the beautiful (and very creative) word cloud entries in the Kick Lupus competition. All in all there were 35 entries to the competition, a great response! The judges on […]
Alain CornetIn 1989, LUPUS EUROPE (then named ELEF)’s first convention took place near Brussels, in the historical city of Leuven. 29 years later, LUPUS EUROPE 2018 annual convention will once again take place in Leuven, and we are looking towards a record attendance with already 41 registrations confirmed. As the convention unfolds, we will make available […]
Alain CornetToday is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals. Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from […]
Alain CornetWe at LUPUS EUROPE wish you all a great World Lupus Day, full of hope and awareness! For this we have created a little animated video about LUPUS EUROPE. Please feel free to share! [wpvideo ILoguQxs] We would also like to repost a video made a couple of years ago about the importance of World […]
✅ Thank you 🙏 to the German #Rheumatology Association @DGRh_Tweets for the invitation to talk about #Fatigue & #Lupus at the 2024 Rheumatologiekongress of Düsseldorf (18-21 Sept). It is (always) a great honor for me to meet my German colleagues 👍
New content online! Current understanding and management of cardiovascular involvement in rheumatic immune-mediated inflammatory diseases http://dlvr.it/TCqcqz
👏 Congratulations to @LupusAcademy for an outstanding event!
🏆 The 🔝 quality of speakers, topics, & the organization has been truly amazing. An incredible learning experience!
🙏🏻 Thanks for including the patient perspective in these important discussions
#LupusAcademy2024
And that's a wrap! Thank you to our Co-Chairs David Isenberg and @ronfvv and to all our speakers and delegates for making #LupusAcademy2024 such a memorable meeting! We also wish to thank our sponsors for their support. Safe travels home everyone, until next year! #SLE #lupus
Our final presentation of #LupusAcademy2024 by @ykoteng_LUMC was an informative discussion of post-transplantation manangement in #lupus
#kidney rheumtwitter #sle
Thank you to @eleana_nt for an insightful discussion on improving patient-physician communication and managing poor adherence in #lupus at #LupusAcademy2024
An excellent poster presentation session covering some very interesting topics this morning at #LupusAcademy2024! Congratulations to Silvia Mancuso and Ana-Luisa Stefanski for winning the prize 👏👏👏 #SLE
😄We are proud to have contributed alongside @LUPUSUK, @LupusOrg, and @LupusCanada to this important research on #SLE damage accrual and patient outcomes.
🙌Thanks, Dr @lupusdoc, for acknowledging the patients' contribution to research!
#LupusAcademy2024
🎉 What an amazing first day we had at the 𝐋𝐮𝐩𝐮𝐬 𝐀𝐜𝐚𝐝𝐞𝐦𝐲 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 in Amsterdam!
The day was packed with insightful talks and lively discussions on #lupus research and management.
🦋 Some of the key highlights included:
✨ Lupus and hemophagocytic lymphohistiocytosis with Dr Jessica Manson.
✨ Lupus and cancer by Dr Sasha Bernatsky.
✨ Lupus and infections led by Dr Bregtje Lemkes.
✨ Lupus and vaccinations by Dr Reşit Yıldırım.
🗣️ Plus, enriching panel discussions on these crucial topics!
💸 We also explored the management of lupus in low-middle-income countries with Dr Sandra Navarra. We had a chance to engage with poster presentations and a lively debate on DOACs in #APS and SLE/APS featuring Prof Ricard Cervera and Dr Hannah Cohen.
🌙 The day concluded with a plenary session on lupus basic science, where Dr Leonid Padyukov discussed lupus genetics 🧬, Dr Claudia Mauri explored the regulation of B and T cell interactions, and Dr Thomas Dörner questioned the role of type I interferon in inflammatory rheumatic diseases like #SLE.
🎶 After such a full day, we ended on a high note with a wonderful evening entertainment featuring a brilliant performance by Prof David Isenberg and the Davidettes and an incredible piano interpretation of Beethoven by Prof Ronald von Vollenhoven.
🥰 Additionally, Professor Anisur Rahman recited a poem where he mentioned many of his colleagues in a flattering way, adding a touch of humour and camaraderie to the night 🙌 .
🤩 Don’t miss our Chair, Jeanette Andersen, and Dalila’s interventions today!
𝐖𝐞 𝐚𝐫𝐞 𝐥𝐢𝐯𝐞-𝐭𝐰𝐞𝐞𝐭𝐢𝐧𝐠 the event‼️ So be sure to 𝐟𝐨𝐥𝐥𝐨𝐰 𝐮𝐬 𝐨𝐧 𝐓𝐰𝐢𝐭𝐭𝐞𝐫 for real-time updates!
📲💻 twitter.com/LupusEurope
#LupusAcademy2024
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My partner was diagnosed with SLE lupus in 2023,we have to give a try on herbal supplements which effectively get rid of herbal Systemic lupus erythematosus (SLE) condition dramatically. After 13 weeks of her usage, my wife lost touch with reality. Suspecting it was the medication I took her off the corticosteroids (with the doctor’s knowledge) and started her on the lupus natural herbal formula we ordered. It is advisable to always try natural herbs at first because MULTIVITAMIN HERBAL CURE ( www. multivitamincare. org ) neutralizes her SLE lupus which surprises everyone at home.
I’ve been through a similar journey and understand your concern. Natural alternative remedies by Dr osewen solution home is a game changers. I was struggling with Psoriasis,thyroid , Fibromyalgia and chronic pains for 3 years. Have you tried reaching out to any support group or organization for help.I wholeheartedly recommend reaching out to him through his Facebook webpages : www.facebook.com/103770562521545 Your path to recovery may be closer than you think. Sending love 💕 xx
Last weekend, Lupus Europe Volunteers participated in an intensive abstract workshop in Leuven.
📊 The workshop combined theoretical sessions that included statistics with practical exercises! We worked to develop abstracts based on the "Living With Lupus in 2024" survey results.
🌟 Continuous education and skill development are essential to fulfil our mission 💪.
❤️ We are grateful for the commitment and enthusiasm of our volunteers, who are truly inspiring, working with us to make a meaningful impact on the lives of those living with lupus across Europe.
🗣️ Our sincere thanks also go to all the patients who participated in our "Living With Lupus in 2024" survey.
🙏 A huge thank you to the valuable input and excellent work of all workshop attendees! We have already drafted a number of abstracts that we could submit to be presented at medical conferences, helping raise awareness of patients' needs.
✅ Let's keep getting involved in research! The more patients respond, the more significant and impactful the data will be.
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Congratulations to all of you in Lupus Europe for all the great work you do! 💪👏☝️👌
My partner was diagnosed with SLE lupus in 2023,we have to give a try on herbal supplements which effectively get rid of herbal Systemic lupus erythematosus (SLE) condition dramatically. After 13 weeks of her usage, my wife lost touch with reality. Suspecting it was the medication I took her off the corticosteroids (with the doctor’s knowledge) and started her on the lupus natural herbal formula we ordered. It is advisable to always try natural herbs at first because MULTIVITAMIN HERBAL CURE ( www. multivitamincare. org ) neutralizes her SLE lupus which surprises everyone at home.
🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life.
💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being.
🚨In addition to lupus, overlapping conditions such as Sjögren’s syndrome and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy.
💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).
‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care.
🔊 And that is why, on this #WorldSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-being
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🚨𝐂𝐚𝐥𝐥𝐢𝐧𝐠 𝐚𝐥𝐥 𝐭𝐡𝐨𝐬𝐞 𝐥𝐢𝐯𝐢𝐧𝐠 𝐰𝐢𝐭𝐡 𝐥𝐮𝐩𝐮𝐬🚨
🔸 Patients
🔸 Family and friends
🔸 Health professionals
#lupus is a chronic, heterogeneous and unpredictable disease.
✅ However, there are many treatment options and non-pharmacological interventions that can help keep lupus under control.
😃 Starting this month, we will be sharing 12 of the latter, and we are going to show you how we do it.
Join us in this #kicklupus challenge!
Let's motivate each other and get better together! 💪
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