Marisa CostaAs relayed in the media, Hydroxychloroquine (Plaquenil, Quensyl,…) is being investigated as a potential treatment for COVID-19 related pneumonia. We all hope that it will help improve the outcomes of those affected by the disease. Unfortunately, in some countries, this has resulted in stock-piling, and the unplanned increase in demand has created shortages, causing anxiety […]
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 are very proud to announce that LUPUS EUROPE has been recognized by the EMA (European Medicine Agency) as “eligible entity”, the select network of patient organizations that work with the EMA to ensure that the needs and concerns of a wide range of patients are represented via direct contact with the Agency. This status […]
Alain CornetWe all know that there remains a lot to explore, and many unmet needs are still there, with regards to lupus and people living with lupus in Europe and in the world. Since March 2018, a multidisciplinary team including doctors, academics and patient advocates have shared their thoughts and aligned priorities to improve lupus care. […]
Alain CornetAs announced in today’s Webinar, LUPUS EUROPE is offering new opportunities for people living with lupus to volunteer and support the cause. Specifically, we are looking for 6 new members for our Patient Advisory Network, and 6 more to create a new Lupus Communication Group. PATIENT ADVISORY NETWORK (PAN) The PAN is a network of people having lupus that structurally […]
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
