Zoe Karakikla-MitsakouZoe Karakikla-MitsakouEvery year, the EULAR Congress stands as a beacon of knowledge, bringing together over 12,000 delegates, including rheumatologists, healthcare professionals, and patients from all walks of life. This year, I had the privilege of being a part of this grand event in the vibrant city of Milan. As a member of the Lupus Europe Patient […]
Zoe Karakikla-MitsakouJoin us for an insightful webinar on Tuesday, December 5th at 19:00 CET, as we present a balanced examination of CAR-T cell therapy in the context of lupus. We are honoured to host Professor Ed Vital, who will share his expertise on both the possible opportunities and challenges of this innovative treatment. In this webinar, […]
Zoe Karakikla-MitsakouHello! My name is Ida, and I’m here to share my incredible journey through the EUPATI Open Classroom, an initiative by the European Patients’ Academy of Therapeutic Innovation (EUPATI). For me, EUPATI training was a ride filled with challenges, dedication, and a newfound understanding of the medical world. Let me be honest; diving into […]
Zoe Karakikla-MitsakouSandra Schaftner volunteers for the German Lupus Group, Lupus Erythematodes Selbsthilfegemeinschaft e.V. She is also one of the German-version translation volunteers of Lupus100. Below is a piece Sandra wrote on smoking and lupus. According to a study presented at the EULAR Congress 2023, smokers have a doubled risk of developing lupus. The study also emphasised […]
Zoe Karakikla-MitsakouLupus Europe at the Lupus Academy’s 12th Annual Meeting: Highlighting Patient Perspectives The Lupus Academy is a long-term initiative committed to improving patient outcomes in systemic lupus erythematosus (SLE). The Lupus Academy provides a highly interactive educational forum and brings together experts from around the world to discuss the latest advances in SLE. […]
Zoe Karakikla-MitsakouThe First Ever Interim Review Meeting The 18th of September 2023 marked a significant milestone for Lupus Europe as the Lupus Europe Board and National Members from across Europe gathered virtually for the first-ever Interim Review Meeting. It was wonderful to see so many familiar faces on the screen! Everyone was united by a […]
Zoe Karakikla-MitsakouThe Lupus Europe Annual Convention 2023 took place in Lisbon from April 28 to May 1, 2023. The theme of this year’s Annual Convention was “Volunteering”. Lupus organisations in Europe are patient-led and volunteer based; volunteers are the life force of our organisations. Being a volunteer can be incredibly rewarding, can enhance skills and […]
Zoe Karakikla-MitsakouWe are thrilled to share some exciting news from the recent GlobalSkin ELEVATE Conference in Brussels, where Annemarie Sluijmers, Vice Chair and Secretary of Lupus Europe, was honoured with the prestigious GlobalSkin Patient Leaders Award. The conference, held from June 1 to 4, brought together experts, researchers, and patient advocates from the field of dermatology […]
Zoe Karakikla-MitsakouOn February 3-5 2023, Lupus Europe organised its 2nd Patient Panel on Youth, bringing together 10 young people from all over Europe to share their experience of living with lupus. The Panel addressed key issues young participants identified in their life with lupus and explored the possibility of creating a Lupus Europe youth group. […]
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 🦋
‼️ Although not everyone is photosensitive, UV exposure could trigger flares in some people with #lupus.
☀️ UV rays are present year-round! Always protect your skin. Especially this Summer!
🤔 Questions? Explore reliable resources like #Lupus100 or ask #LupusGPT or #EasyLupus!
Huge congratulations, Professor @Lupusreference! 💜
🥰 Lupus Europe is proud to have been part of this project from the very beginning.
🧠 Brain fog is one of the symptoms that many people with lupus struggle to explain and have recognised.
🙌🏻 This instrument is a very
✅ Dear #lupus patients, I am very happy to report that the LBFSS manuscript (Lupus #Brainfog Severity Scale) just got accepted for publication @Lupus_SM 🦋 I am very happy as this is the first SLE-specific #cognition symptom score in SLE and will help so many people 🙏
✅ 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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