Zoe Karakikla-MitsakouThe European Alliance of Associations for Rheumatology (EULAR) Congress 2023 was incredibly interesting, full of groundbreaking research and information about lupus! EULAR 2023 was also very successful for Lupus Europe and its Patient Advisory Network (PAN) members. With unwavering dedication and hard work, PAN members showed their commitment to supporting the lupus community across […]
Zoe Karakikla-MitsakouLupus Europe Youth Group Meet Up Lupus Europe is organising a Meet Up of the Lupus Europe Youth Group! This event will take place from October 20 to October 22, in Leuven (Belgium). There are a few remaining spots available for new members to join: Do you have lupus? Do you live in geographical Europe? […]
Zoe Karakikla-MitsakouDiscover the future of healthcare at the upcoming Lupus Europe Digital Health Webinar! Join us on Thursday, September 28th at 20:00 CET (Brussels time) as we explore the fascinating world of digital health with renowned speaker, Dr. Philipp Bosch. Don’t miss this event! To register, send an e-mail to secretariat@lupus-europe.org
Zoe Karakikla-MitsakouSandra Schaftner volunteers for the German Lupus Group, Lupus Erythematodes Selbsthilfegemeinschaft e.V.. She is also one of the German-version translation volunteers of Lupus100. Lupus100.org is a MULTILINGUAL website run by Lupus Europe that contains clear answers to 100 questions about lupus. Lupus experts and patients have worked collaboratively on the website. Lupus100.org has also been […]
Zoe Karakikla-MitsakouAt the occasion of World Lupus Day 2023, Lupus Europe is delighted to announce the launch of the multi-lingual website of Lupus100! Lupus100.org is a MULTILINGUAL website run by Lupus Europe that contains clear answers to 100 questions about lupus. Lupus experts and patients have worked collaboratively on the website. Lupus 100.org has also […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Anne-Britt Eide and Cathrine Hjelmeset from the Norwegian Lupus Group, who talked to […]
Zoe Karakikla-MitsakouLupus Europe Youth Group Meet Up Lupus Europe is organising a Meet Up of its Youth Group. There are a few spots available for new members to join: Do you have lupus? Do you live in geographical Europe? Are you between 18-35 years old? Do you want to connect with other young people with lupus? […]
Zoe Karakikla-MitsakouHow does it feel when you have had lupus for more than 20 years ? Lupus Europe is organising its 4th Patient Panel which will focus on the theme of « Senior with lupus ». If you are 60 Years + and have been diagnosed before 2000, send us an email and be selected to […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Rita Mendes from the Portuguese Lupus Association – Associação de Doentes com Lupus […]
Zoe Karakikla-MitsakouVolunteering can be incredibly rewarding, important, and empowering. With that in mind we want to announce the Kick Lupus 2023 Competition, a competition that this year is all about volunteering! To enter the Kick Lupus 2023 Competition, send us your testimonial on “How has volunteering for a lupus organisation helped changed my life?” […]
🌈 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
🌍 This month in our #1Month1Study campaign: “Living with lupus in 2020”, a survey revealing the real burden of lupus across 35 European countries.
🦋 From diagnosis delays to daily impact, this study brings the patient perspective to the forefront.
https://doi.org/10.1136/lupus-2020-000469
🌈 Beyond what you’ve experienced, something awaits.
🌟 A new way to approach your consultation is coming.
Make your consultation count.
💥 Stay tuned
#MakeItCount
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🆘 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...
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❤️🔥 Something big is coming...
... this #WorldLupusDay 🌍.
#makeitcount
0 CommentsComment on Facebook
📣 Register now by sending an email to secretariat@lupus-europe.org, and don't miss our Youth Group Webinar!
❞𝗙𝗲𝗿𝘁𝗶𝗹𝗶𝘁𝘆 𝗮𝗻𝗱 𝗳𝗮𝗺𝗶𝗹𝘆 𝗽𝗹𝗮𝗻𝗻𝗶𝗻𝗴 𝗳𝗼𝗿 𝘆𝗼𝘂𝗻𝗴 𝗽𝗲𝗼𝗽𝗹𝗲 𝘄𝗶𝘁𝗵 𝗹𝘂𝗽𝘂𝘀❞
🌟 What should young people know? What questions do young people have?
🌟 Key information to support informed decisions and future planning
🖥️ In this online webinar, Lupus Europe’s Youth Group will host an open, evidence-based discussion with Prof. Laura Andreoli on lupus, lupus treatments, fertility, pregnancy planning, and reproductive health in young people.
The session will address real questions from young lupus patients, providing clear, practical information to support communication and decision-making between patients and healthcare professionals.
🗣️ Moderated by Jeanette Andersen
Save the date!
🗓️ May 10, 2026
⏰ 19:00 CET (i. e. Paris time)
💻 Zoom
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