Alain CornetHelp us understand the multiple facets of life with lupus today…
Alain CornetSince Hydroxychloroquine (HcQ) has been regularly mentioned in media as a potential medication in the fight against COVID, the number of patients highlighting unavailability issues increased substantially. With the help of its members, LUPUS EUROPE initiated a survey amongst patients to obtain broad based feedback on the magnitude and impact of the issue. Results covering […]
Alain CornetOver the past weeks, LUPUS EUROPE and several of its members have worked to improve availability of Hydroxychloroquine for people with lupus in Europe, as speculations on its possible use for COVID treatment have resulted in an increased (off-label) demand. Our objective is that all patients with a chronic condition requiring Hydroxychloroquine have access, if […]
Alain CornetLUPUS EUROPE and the ERN ReCONNET Patient representatives have launched a short survey to better understand how we can improve quality of life for people living with a rheumatic condition through better patient education. If you are a patient living with a Rheumatic condition or any other Chronic or rare disease, simply follow this link […]
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 would very much like to share some news with you! If you are a Lupus Europe member or potential member, volunteer or potential volunteer, or simply a member of the patient community interested in the activities of LUPUS EUROPE, join us on February 17, 2020 at 20:00 Paris time. On the agenda:– Introduction of […]
As part of its cooperation with the ERN ReCONNET, Lupus Europe is launching an important survey, which we would like to ask you to disseminate as largely as you can to people actually living with lupus. We have made the effort of providing 13 different languages, and are open to adding new ones, so we hope […]
Alain Cornet30 Years ago, on May 26, 2019, LUPUS EUROPE’s Constitution (then under the name of ELEF) was signed… The European Lupus Federation was born. as we celebrate this anniversary, we asked current and past Chairs to reflect on those years in support of People living with lupus in Europe. Yvonne Norton, Chair from 2002 […]
Alain CornetThe 22nd EULAR Annual European Conference of PARE took place in the stunning, historical city of Prague in the Czech Republic 5-7 April 2019 with over 120 delegates. PARE ‘People with Arthritis and Rheumatism in Europe’ forms an integral role at EULAR ‘The European League Against Rheumatism’. The presentations and workshops at the PARE Conference […]
☀️ As we close our #LupusUVprotection campaign, remember: reliable information matters.
Have questions about UV light, symptoms & #lupus?
🔹 #LupusGPT: free, anonymous AI tool to help people find reliable, valid lupus information in almost any language
https://lupusgpt.org/
Consensus is not just agreeing on predefined items. #ELICIT starts earlier: eliciting facets experts, incl. patients, see in complex rare-disease concepts, structuring & testing agreement.
For clearer #lupus & rare CTD definitions.
Congrats @Lupusreference, @ERN_ReCONNET et al!
✅ Happy to report that the @ERN_ReCONNET new methodology for eliciting #consensus on high-level complex definitions in the context of rare connective tissue and inflammatory diseases, such as #lupus (ReCONNET #ELICIT) has been ACCEPTED FOR PUBLICATION 👍 More...soon
🤩 Lupus Europe is at #WCRSD2026!
👩Our Vice-Chair & Secretary, @AnnemarieS66, is at this event organised by @ERN_Skin & the René Touraine Foundation.
🟪Skin matters in lupus: in our 2020 survey, skin was affected in 59.4% of respondents.
https://f.mtr.cool/vvmrxzqylv
Solar radiation is composed, among others, of:
🔸 Infrared (IR).
🔸 Visible light.
🔸 Ultraviolet (UV) light, which has 3 types: UVA, UVB and UVC.
🔴 UV radiation is most associated with flare risk and exacerbation of symptoms in #lupus.
Some UV facts 🧵 ⤵️
#LupusUVprotection
😃 Today we are taking part in the DORIS+ meeting in London, alongside clinicians and researchers like @Lupusreference & @ZahiTouma, working on remission in #SLE.
🦋 DORIS+ builds on the original DORIS definition and explores deep remission, with relevance for research, care and
✅ Happy to report that the #ENDORSED study, defining SEVERE #Lupus has been submitted for review and hopefully publication. We have defined by consensus both "severe #SLE" but also "SLE with severe impact on life" which is soooo important in the patient perspective 👍🦋
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🔴 Healthcare professionals: Do you discuss extreme heat safety with your patients?
🦋 Patients: Has your doctor ever explained how to protect yourself during a #heatwave?
Extreme heat can affect health, especially in people with #lupus. Reliable information matters.
🎥 Our #EULAR2026 recap webinar is now on YouTube!
Lupus Europe volunteers bring back some key learnings: fatigue, pain & lived experience, #LupusGPT, access, youth co-creation & new research directions.
Thank you to those who helped make this possible
https://f.mtr.cool/ryytqqlxop
☀️ As we close our #LupusUVprotection campaign, here is one important reminder:
👉 UV protection in lupus is not only about sunny beach days.
😶🌫️ UV exposure can happen on cloudy days, near some windows, while travelling by car, or through certain artificial light sources. And in some people with lupus, its effects may not appear immediately.
‼️ That is why clear, reliable information matters.
Whether you have questions about UV light, photosensitivity, skin symptoms, flares, fatigue, daily life with lupus, or many other lupus-related topics, Lupus Europe provides free, reliable and multilingual tools to support you:
🔹 #𝗟𝘂𝗽𝘂𝘀𝟭𝟬𝟬
Patient-friendly answers to 100 key questions about lupus, including sun exposure and UV protection
lupus100.org/en/questions/can-i-sunbathe-with-lupus
Created with lupus experts & patients. Available in 19 languages.
🔹 #𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧
A free artificial intelligence tool to help people find reliable, valid lupus information in almost any language.:
lupusgpt.org/
🔹 #𝗘𝗮𝘀𝘆𝗟𝘂𝗽𝘂𝘀
Like LupusGPT, but designed to make the answers even easier to understand:
easy.lupusgpt.org/
🦋 Because lupus does not only affect clinic appointments. It affects everyday life.
✅ Stay informed. Ask questions. Use reliable resources.
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✅ Yesterday Lupus Europe took part in the DORIS+ meeting in London, alongside clinicians, researchers and patient representatives working on a definition of deep remission in #SLE.
🌟 Lupus Europe was wonderfully represented by Jeanette Andersen, Chair of the Lupus Europe Board, Francesca Marchiori, Lupus Europe Board and PAN Member, Blanca Rubio, PAN Member and Zoe Karakikla-Mitsakou, Lupus Europe General Secretary.
🦋 This continues Lupus Europe involvement in the work on remission in lupus, building on the original DORIS initiative, where Lupus Europe also contributed.
🤔 But what is DORIS?
DORIS stands for Definitions Of Remission In SLE. It helped establish a clinical definition of remission in systemic lupus erythematosus.
🐠 DORIS+ builds on that foundation and explores the concept of deep remission.
💁♀️ Since the original DORIS definition was published, emerging evidence has suggested that a deeper state of remission may be within reach for at least some people with lupus. DORIS+ aims to better define what that could mean.
This matters because remission is an important concept for research, clinical care and people living with lupus.
🦋 Lupus Europe is proud to be part of this important taskforce alongside many lupologists and researchers including Prof. Laurent Arnaud, Prof. Ronald van Vollenhoven, Prof. Zahi Touma, Prof. David Isenberg, Prof. Mariele Gatto, Prof. Ioannis Parodis, Prof. Eloisa Bonfá, Prof. Frédéric A. Houssiau, Prof. Andrea Doria, Prof. Ricard Cervera and Prof. Maarten Limper.
😃 We will keep you updated!
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☀️ 𝗨𝗩 𝗹𝗶𝗴𝗵𝘁 𝗮𝗻𝗱 𝗹𝘂𝗽𝘂𝘀: 𝘂𝗻𝗱𝗲𝗿𝘀𝘁𝗮𝗻𝗱𝗶𝗻𝗴 𝘁𝗵𝗲 𝗱𝗶𝗳𝗳𝗲𝗿𝗲𝗻𝗰𝗲 𝗯𝗲𝘁𝘄𝗲𝗲𝗻 𝗨𝗩𝗔 𝗮𝗻𝗱 𝗨𝗩𝗕 𝗺𝗮𝘁𝘁𝗲𝗿𝘀.
Ultraviolet light is one of the components of solar radiation. In lupus, UV exposure can contribute to 𝘄𝗼𝗿𝘀𝗲𝗻𝗶𝗻𝗴 𝘀𝘆𝗺𝗽𝘁𝗼𝗺𝘀 𝗼𝗿 𝘁𝗿𝗶𝗴𝗴𝗲𝗿𝗶𝗻𝗴 𝗳𝗹𝗮𝗿𝗲𝘀 in some people.
💁♀️ That is why we are launching our #lupusuvprotection campaign: to raise awareness of the impact UV light can have on people living with lupus, especially during summer.
🦋 Photosensitivity is one of the most common manifestations of systemic lupus erythematosus. In the Lupus Europe Living with SLE in 2020 survey, 𝗽𝗵𝗼𝘁𝗼𝘀𝗲𝗻𝘀𝗶𝘁𝗶𝘃𝗶𝘁𝘆 𝘄𝗮𝘀 𝗿𝗲𝗽𝗼𝗿𝘁𝗲𝗱 𝗯𝘆 𝟲𝟴.𝟱% of respondents.
But UV-related lupus symptoms do not always affect only the skin. UV exposure has also been associated with systemic symptoms such as 𝗳𝗮𝘁𝗶𝗴𝘂𝗲 𝗮𝗻𝗱 𝗷𝗼𝗶𝗻𝘁 𝗽𝗮𝗶𝗻, and may contribute to 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗮𝘁𝗶𝗼𝗻 in some people.
So what is the difference?
🔴 𝗨𝗩𝗕 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
🔸 Is mainly associated with sunburn.
🔸 Its intensity fluctuates during the day.
🔸 It is usually strongest around the middle of the day.
🔸 It mainly affects the outer layers of the skin.
🔴 𝗨𝗩𝗔 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
🔸 Penetrates deeper into the skin.
🔸 Is associated with skin ageing.
🔸 Its intensity is more constant during the day.
🔸 It can penetrate clouds and windows.
🌡️ 𝗜𝗻𝗳𝗿𝗮𝗿𝗲𝗱 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
🔸 Is perceived as heat.
🔸 Feeling less heat does not necessarily mean there is no UV exposure.
‼️ This is important because UV exposure can still happen even when the sun does not feel strong. UVA rays can pass through clouds and some types of glass, which means UV protection may still be relevant on cloudy days, near windows, while travelling by car or during everyday activities.
Although not everyone with lupus is photosensitive, people living with lupus are encouraged to discuss UV protection with their healthcare team and to learn what protective measures are appropriate for them.
Learn more through #Lupus100:
f.mtr.cool/lptcxwpubz
You can also ask #lupusgpt or #easylupus questions about lupus and UV light:
f.mtr.cool/nfccvjbbep
f.mtr.cool/clxgzteshl
Information on Lupus100 is available in several languages:
🇩🇰 f.mtr.cool/lkmkxyanqw
🇩🇪 f.mtr.cool/jmyfwcgsae
🇪🇸 f.mtr.cool/kdixsnubvi
🇬🇷 f.mtr.cool/dpqkzkejog
🇫🇷 f.mtr.cool/lwhtfzpnte
🇮🇹 f.mtr.cool/utsezhzrqp
🇳🇱 f.mtr.cool/sbfwktzpdr
🇷🇴 f.mtr.cool/xbcdhkqyud
🇫🇮 f.mtr.cool/hkfvtmjobx
🇺🇦 f.mtr.cool/cgpmlevqlb
#lupusuvprotection
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☀️ #heatwave can affect your health, especially if you have #lupus.
The WHO notes that hot weather can exacerbate existing medical conditions and that people with chronic illness may be more vulnerable during periods of extreme heat.
Has your doctor ever spoken to you about how to stay safe during extreme heat?
Reliable information can help you plan ahead and protect your health.
Before and during a heatwave:
✅ Plan essential outdoor activities for cooler hours
✅ Stay in the shade and keep indoor spaces as cool as possible
✅ Drink water regularly
✅ Avoid alcohol and limit sugary or caffeinated drinks
✅ Protect yourself from UV light if you need to go outside
✅ Check how your medicines should be stored
✅ Seek medical advice if you experience unusual symptoms or if symptoms persist
❓ Questions about lupus, UV and heat?
Explore reliable lupus information through #Lupus100, #lupusgpt or #easylupus. Free, multilingual, anonymous tools and resources, validated by lupologists and patients.
Save this post and share it with someone who may need it this summer.
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