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 […]
Joining the global community
raise #Lupus awareness with @LupusEurope
Together we can #MakeItCount on May 10. #LupusAwarenessMonth
🌈 Beyond what you’ve experienced, something awaits.
🌟 A new way to approach your consultation is coming.
Make your consultation count.
💥 Stay tuned
#MakeItCount
🆘 Skin matters in lupus.
‼️75–80% of people with SLE experience skin involvement, yet skin lupus has seen no new treatment options for over 80 years.
WHO’s draft Global Action Plan on Skin Diseases is open for consultation.
🗣️ Add your voice by 10 May 👇
#WHO has opened a public consultation on its draft Global Action Plan for Skin Diseases.
Your input can help shape how countries act and ensure accountability for the 2B+ people affected.
🗣️ Make your voice heard
📅 Deadline: May 10, 2026
👉 https://www.who.int/news-room/articles-detail/public-consultation--draft-global-action-plan-on-skin-diseases-as-a-global-health-priority-(gap-skin)
❤️🔥 Something big is coming...
... this #WorldLupusDay 🌍.
#MakeItCount
⏳Clock is ticking!
🟪 Join the Youth Group & Prof @lauraandreoli80 for this webinar on fertility & family planning.
Fears & misconceptions on this topic are common. Reliable, patient-friendly information matters.
📅 May 10- 19h CET
📩 Register at secretariat@lupus-europe.org
🤔What if we could better understand lupus nephritis without relying on a kidney biopsy?
At #ELM2026, we asked experts to explain their work in short, patient-friendly videos.
In this one, Dr @andreafava shares key insights on liquid biopsy.
Watch here: https://youtu.be/GnRbBK7x5hs
❗Save the date
🦋Webinar for #WorldLupusDay:
🧑💻“Fertility, family planning for YOUNG lupus patients webinar”
📆 10th May
🕖 19h CET
With Prof @lauraandreoli80 & Youth Group Members.
Moderated by our Chair, @Jeanette_Lupus.
‼️Register now! E-mail secretariat@lupus-europe.org
✅ Very happy to report that PART 2 of our #consensus study on rare #lupus manifestations has been accepted for publication...in a very good journal! More...soon 👍
For part 1, check: https://doi.org/10.1016/s2665-9913(25)00063-3
🤩 May 10 is the #WorldLupusDay! And our Youth Group is commemorating it with a 𝐬𝐩𝐞𝐜𝐢𝐚𝐥 𝐰𝐞𝐛𝐢𝐧𝐚𝐫 focused on one of the most important and often overlooked topics for young people living with lupus: 𝐟𝐞𝐫𝐭𝐢𝐥𝐢𝐭𝐲 𝐚𝐧𝐝 𝐟𝐚𝐦𝐢𝐥𝐲 𝐩𝐥𝐚𝐧𝐧𝐢𝐧𝐠.
👩⚕️ How does lupus affect fertility?
💊 What should you consider before planning a pregnancy?
🧠 How can healthcare professionals better support young patients in these decisions?
This session brings together clinical expertise and real patient perspectives to provide clear, practical insights.
📅 𝐌𝐚𝐲 𝟏𝟎
⏰ 7 pm CET (i. e. Paris time)
🎙️ Speaker: Prof. Laura Andreoli
🗣️ Moderated by our Chair, Jeanette Andersen
👥 Organised with the Lupus Europe Youth Group
📌 Whether you are living with lupus, supporting someone who is, or working in healthcare, this webinar is for you.
👉 Don't wait any longer and register now! Send an email to secretariat@lupus-europe.org
0 CommentsComment on Facebook
🌈 Beyond what you’ve experienced, something awaits.
🌟 A new way to approach your consultation is coming.
Make your consultation count.
💥 Stay tuned
#MakeItCount
0 CommentsComment on Facebook
🆘 𝗦𝗸𝗶𝗻 𝗺𝗮𝘁𝘁𝗲𝗿𝘀 𝗶𝗻 𝗹𝘂𝗽𝘂𝘀.
🌍 The World Health Organisation has opened a public consultation on the draft Global Action Plan on Skin Diseases, a strategic framework that will guide governments in developing national plans on skin diseases.
🟣 Why is this important for the #lupus community?
👉 75–80% of people with SLE experience skin involvement. Skin lupus, including ACLE, SCLE and CDLE, has seen no new treatment options for over 80 years.
💬 This is an important opportunity to make sure that the voices of people living with lupus and the wider civil society community are heard.
📅 Deadline: 10 May- #WorldLupusDay
🔗 Add your voice and share with your community: www.who.int/news-room/articles-detail/public-consultation--draft-global-action-plan-on-skin-disea...
0 CommentsComment on Facebook
❤️🔥 Something big is coming...
... this #WorldLupusDay 🌍.
#makeitcount
0 CommentsComment on Facebook
