Alain CornetThe LUPUS EUROPE board met in Milan for a fruitful week-end of meetings from 9-11th of December. Several topics were on the agenda, including the very first preparations for the 2017 convention and mapping out the very busy 2017 calendar of events and work sessions. As well as the board (minus the wonderful Anne who was […]
Alain CornetThe Swedish Lupus group have sent us their report of the LUPUS EUROPE convention in Würzburg. It’s in Swedish – of course – but we thought it would be nice to share with you! Have you made a convention report for your group’s newsletter or magazine? If so we’d love to share it here too […]
Alain CornetToday, Tuesday, December 6th Chair Kirsten Lerstrøm, LUPUS EUROPE, was invited to address the European Parliament Interest Group on Rheumatic and Muscoskeletal Diseases (RMDs) on Patients’ Perspectives on Improving Access to Care and Therapies for People with Rare RMDs at the meeting of “Policy Issues and Challenges in the Treatment and Care of Rare Diseases”.
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
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🌈 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
