Alain CornetLupus Europe will be attending the following: EPF WE CARE – Final project meeting EUPATI – Taking off in your country – An interactive Workshop on Implementing in your country Eular PARE annual European conference – Members can read Blanca Rubio’s report from last year by following this link
Alain CornetTomorrow, 30th March, Katharine will be taking part in the second meeting of the EPF working group on Access to Healthcare. More details here.
Alain CornetDear 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. […]
Alain CornetWork on the Lupus Tamer book is nearly complete for French and English. We will announce when it is available in e-book format.
Alain CornetFollowing 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, […]
Alain CornetKirsten 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!
Alain CornetWe 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.
🦋 Upcoming @ern_reconnet webinar!
“CAR-T therapy in #SLE: explained to the patient”
😊 With Prof. Schett as guest speaker.
Moderated by Prof @MartaMartamosca & @Jeanette_Lupus, our Chair & ePAG representative of the ERN ReCONNET
🔗 Register now ⬇️
Register now for the 🆕@ern_reconnet #webinar “CAR-T Therapy in Systemic Lupus Erythematosus (SLE): Explained to the Patient” with Prof. Georg Schett, moderated by Prof. Marta Mosca and the ePAG Jeanette Andersen.
🗓️May 13th - 16 CET
✍️Registration is: http://rb.gy/s18q03
Celebrating @LupusEurope on #WorldLupusDay - find your #Lupus community and supporting #LupusAwareness around the world.
❤️Thank you for your support on this day & for ⬆️ awareness of the potential impact lupus can have.
However, there's something 🗝️that we also need to show.
🦋Lupus is an invisible illness with many faces. Let’s close #WorldLupusDay with our hopes,laughter & enthusiasm for life
1/3 💜 Thank you to everyone who joined our Youth Group webinar on fertility, family planning & lupus this #WorldLupusDay.
❤️ A special thank you to Prof. @lauraandreoli80 for leading such an important discussion on reproductive health and lupus care.
#MakeItCount. Thread ⬇️
It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLE's 🔝dangerous & frequent complications.
Routine checkups & treatment make it possible for 60–70% of patients to achieve complete or partial remission
#WorldLupusDay
#MakeItCount
Despite significant improvements in diagnosis delay & treatment strategies,the burden of #SLE remains⬆️.
Association between diagnosis delay, disease activity & burden on daily life in patients with #lupus by @Lupusreference et al: https://buff.ly/3pgBsrL
#WorldLupusDay
#Lupus100
#Lupus is an autoimmune disease that affects nearly 500,000 people in Europe and over 5 million people in the world.
It affects not only patients but also their loved ones.
Let's raise awareness of the importance of an early diagnosis
#WorldLupusDay
#MakeItCount
#Lupus100
🚨 #Lupus is a complex and heterogeneous systemic autoimmune disease in which the body's immune system attacks its own tissues and organs, causing inflammation and damage in any part of the body
Visit #Lupus100 & #LupusGPT for more!
#MakeItCount
#WorldLupusDay
#MakeLupusVisible
🦋 Upcoming ERN ReCONNET webinar!
“CAR-T therapy in Systemic Lupus Erythematosus (SLE): explained to the patient”
😊 The webinar will feature Prof. Georg Schett as guest speaker and will be moderated by Prof. Marta Mosca and Jeanette Andersen, Chair of Lupus Europe and ePAG representative of the ERN ReCONNET SLE disease group.
📅 Date: 13 May 2026
⏰ Time: 16:00 CEST
💻 Format: Online webinar
This session is designed to help make complex scientific information more understandable for people living with lupus, patient advocates, healthcare professionals and anyone interested in SLE.
🔗 Register here:
us06web.zoom.us/webinar/register/WN_SE65ZaxFT9isuoXi0O6o8w#/registration
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🦋 #WorldLupusDay is coming to an end!
❤️ Thank you all for the support you have shown throughout this important day, as people around the world have come together to raise awareness of the impact lupus can have.
🌈 At Lupus Europe, we believe there is something very important we also need to show the world: our vitality, our energy, and our will to enjoy life, take part, contribute, and be heard.
🌟 Our vision is a fulfilling life for all people with lupus in Europe, until we reach a world without lupus.
😃 We work hard. We show up. We support each other. We all live with lupus in different ways, even if our amazing Lupus Europe family sometimes seems to forget about it when we are at an event, in a meeting, or working together for the organisation.
🦋 Lupus is an invisible illness with many faces. Let’s close this #WorldLupusDay with our hopes, our laughter and our enthusiasm for life.
💬 That is why today we also want to remind you of our #MakeItCount campaign and the 𝐋𝐮𝐩𝐮𝐬 𝐂𝐨𝐧𝐬𝐮𝐥𝐭𝐚𝐭𝐢𝐨𝐧 𝐂𝐚𝐫𝐝𝐬.
These cards are designed to help people living with lupus prepare for medical appointments, organise their thoughts, identify what matters most, and make consultations more focused and meaningful.
🌺 Visit our website, download the Lupus Consultation Cards, and use them at your next appointment.
www.lupus-europe.org/lupus-consultation-cards/
Because your priorities, questions, and needs deserve a place in every consultation.
Let’s #MakeItCount.
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💜 Thank you to everyone who joined our Youth Group webinar on fertility, family planning & lupus today!
Important conversations like these help tackle fears, misconceptions & unanswered questions around lupus and reproductive health.
🦋 Don't forget to include this topic in the Lupus Consultation cards in your next appointment!
#MakeItCount. Check out this new tool that helps patients prepare for consultations and improve communication with healthcare professionals.
Available in many languages!
📌 Download here:
www.lupus-europe.org/lupus-consultation-cards/
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