Month: March 2015

EPF working group on access

Tomorrow, 30th March, Katharine will be taking part in the second meeting of the EPF working group on Access to Healthcare. More details here.

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World Lupus Day 2015

Dear Lupus Europe members, The theme for this year’s World Lupus Day is “Tame your wolf – Tame your lupus”. We were delighted to be able to ask Leslie Quagraine, a fellow lupus sufferer, if he could produce the artwork for our campaign. Leslie was born in London but is a long-time resident in Finland. […]

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The Lupus Tamer

Work on the Lupus Tamer book is nearly complete for French and English. We will announce when it is available in e-book format.

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LUPUS EUROPE Patient Panel on Treatment – A great success

Following on from the workshop held during the Helsinki convention, LUPUS EUROPE organised a Patient panel, bringing together 10 people living with lupus, from 7 countries, to share their experience about “treatment”, with a view to help improving the quality of life of people living with lupus. The Panel was conducted through a series of interactive presentations, […]

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Activities February and March

Kirsten attended the Lupus Academy meeting in Rome from 27-28th February – 1st March The trustees will be meeting from 20th – 22nd March – Items on the agenda include organisation for our 2015 Convention to be held in Vienna following directly on from the ICL congress – more information on the convention coming soon!

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Welcome to the Lupus Europe blog

We have created this blog to keep you up to date with the latest news and happenings in Lupus Euorpe. We hope you enjoy reading it.

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Live Twitter Feed

Lupus Europe Follow 7,227 4,307

Lupus Europe is the umbrella association of currently 32 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.

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Amanda G @LAlupusLady ·

2 May 2050478010424590603

Joining the global community
raise #Lupus awareness with @LupusEurope

Together we can #MakeItCount on May 10. #LupusAwarenessMonth

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Lupus Europe @LupusEurope ·

5 May 2051558176164655557

🌈 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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Lupus Europe @LupusEurope ·

4 May 2051364319502414280

🆘 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 👇

GlobalSkin @IADPO

#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)

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Lupus Europe @LupusEurope ·

1 May 2050229596344164578

❤️‍🔥 Something big is coming...

... this #WorldLupusDay 🌍.

#MakeItCount

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Lupus Europe @LupusEurope ·

30 Apr 2049776733935575454

⏳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

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Lupus Europe @LupusEurope ·

29 Apr 2049406156574015597

🤔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

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Lupus Europe @LupusEurope ·

23 Apr 2047330738580730277

❗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

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Laurent ARNAUD @Lupusreference ·

18 Apr 2045504413817544806

✅ 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

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Live Facebook Feed

🤩 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 ... See MoreSee Less

🤩 May 10 is the #

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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 ... See MoreSee Less

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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... ... See MoreSee Less

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❤️‍🔥 Something big is coming...

... this #WorldLupusDay 🌍.

#makeitcount ... See MoreSee Less

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