Alain CornetThe Vienna Convention is just over two months away now. Has your organisation submitted its trustee nominations yet? If you have someone you think could be an asset, please don’t hesitate to get in touch with the LUPUS EUROPE secretariat (secretariat@lupus-europe.org) for more information on how to apply. We are also still looking for volunteers to […]
Alain CornetJune is quite a busy month for LUPUS EUROPE and its representatives. Here’s some of what’s going on. Nuria Zúñiga is representing LUPUS EUROPE at Doctors 2.0 & You from 4th-5th June in Paris. She will also be representing us at the Eyeforpharma patient summit in London from 25th-26th June and at Aware for All in London. […]
Alain CornetLupus Europe has featured in EPF’s latest newsletter, with a focus on our World Lupus Day campaign. Click here to see the article.
Alain CornetHere is our second ‘Trustee story’, this time from Katharine. When I was first diagnosed, I didn’t even know that there was a patient association in my country, let alone a European umbrella organisation working towards common goals on behalf of other European associations. I haven’t been able to work for a few years due […]
Alain CornetToday is World Lupus Day, a great time to be thinking about bringing the Lupus World together. ‘Meet the Lupus World’ is our theme for the Lupus Summit in Vienna on 5th September 2015. The summit will take place as an integral part of our annual convention. Make sure your group is represented by getting in touch with […]
Alain CornetFrom the invitations to the convention which have just been sent out, you will see that there are two trustee positions up for election in September of this year. Having good candidates to carry on our work is extremely important, as is keeping a dynamic team and that means bringing in fresh people. Becoming a trustee […]
Alain CornetWe are happy to share a video for World Lupus Day where Claudine, Jane and Jeanette speak of the importance of such an event. [youtube https://www.youtube.com/watch?v=ae14ZLCdbqg&w=560&h=315]
Alain CornetWe are currently at the Eular PARE congress in Dublin and delighted to report that our World Lupus Day poster has been very well received. Here are some of the comments, among many: “Very evocative”, “A really strong message”, “It really talks to me of control, not a question of being ‘friends’ with the wolf […]
Alain CornetIf you are a member of one of LUPUS EUROPE’s member organisations and are interested in getting more involved as a patient advocate – spreading awareness, attending events, working on specific projects… we would love to hear from you. Even if you can only offer a little of your time, your contribution could make a […]
Alain CornetInterview with Jan Geisler, director of EUPATI, on the Patients’ Academy. He answers questions such as: “What is the goal of EUPATI?” “Why did you feel it was necessary to create such an academy?” “What is the profile of the students enrolled in the EUPATI course?” “What will they (the students) learn?” To view the […]
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
