Alain CornetHello again – now a note about day 2 at the IAPO GPC 2016! (International Alliance of Patients Organisations) Global Patients Conference 2016) Sunday morning was devoted to UHC (Universal Health Coverage). We had two presenters, from the WHO (World Health Organisation), Nittita Prasopa-Plaizier and Mario Ottigilo. UHC is a global project with the goals : health […]
Alain CornetThis week the training begins… dedicated to Denmark – click on Run with Andreas for more.
Alain CornetWe have a new page on the LUPUS EUROPE blog, in honour of an inspiring young man who has decided to run with and for LUPUS EUROPE. To follow his story each week simply click on the tab ‘Run with Andreas’. Week 0/24 Greatest life Challenge, till the next one! A few months ago […]
Alain CornetLUPUS EUROPE’s annual convention will be held in Würzburg, Germany this year from 28th September (afternoon welcome and registration) – 02 October 2016 (closing after morning sessions). The German Lupus Association is celebrating their 30th anniversary this year and is looking forward to welcoming us to Germany for the occasion. More information coming soon…
Alain CornetHI! from the IAPO (International Alliance of Patients Organisations) Global Patients Conference 2016! I’m representing Lupus Europe at this amazing conference! From www.iapo.org.uk “150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world.” My objective here was to represent Lupus Europe […]
Alain CornetPatients take universal health coverage into their own hands 150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world. Patients’ groups, academics and health organisations will meet at the 7th Global Patients Congress, from 9-11 April, to share innovative […]
Alain CornetIn one month’s time it’s World Lupus Day. For the occasion the World Lupus Federation (which reunites the Lupus Foundation of America, LUPUS Europe and other Lupus federations around the world) has set up a petition, addressed to the World Health Organisation, requesting that Lupus become a priority, enabling patients to be diagnosed and treated as quickly […]
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
🙏 Thank you @LupusEurope and thank you as well to all those living with #lupus who have participated from the first step of #Brainfog qualitative assessment to the final validation of the #LBFSS - This new #PRO was made WITH you and FOR YOU 🦋
✅ 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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🎥 Missed our #EULAR2026 recap webinar?
The recording is now available on YouTube.
In this session, Lupus Europe volunteers bring back some key lupus-related learnings from EULAR 2026 from fatigue, pain & lived experience, to LupusGPT, access, youth co-creation and new research directions.
A huge thank you again to everyone who helped make this webinar possible.
Watch here:
f.mtr.cool/ncqeapqfjt
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