@lupuseurope.bsky.social
Lupus Europe is the umbrella association of currently 31 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.
🛠️Scheduled maintenance alert
Today, between 12:00 and 18:00 CET, we will be carrying out maintenance work on both our main website & #Lupus100 website.
🌐 During this time, you may experience limited access or temporary disruptions.
Thank you for your support & understanding!
🦋 Living with #lupus can be tricky, especially when searching for high-quality, reliable information.
😵💫 Feeling overwhelmed? Discover #LupusGPT! Our AI tool offers a world of doctor/patient-validated knowledge.
🤩Available in most languages!
Visit https://f.mtr.cool/xnlsgbevmi now
Are factors like fatigue, depression or pain preventing you from pursuing your fitness goals?
We have🔝news!
Join our free tailored exercise program, designed to accommodate those with mobility limitations https://buff.ly/45SQAMr
Try it this Summer!
Let's #KickLupus together!
What makes this work special?
It’s led by a doctor & a patient—Dr @G_O_Daniel & Zoe Karakikla-Mitsakou—who contributed equally.
Together with the🔝Prof @LupusReference & Lena Koskina, they reviewed 10 years of research & proposed solutions at every step
https://t.co/OXq9YGUddD
☀️Welcome, August!
This month, #KickLupus focuses on social determinants of health (SDH)- factors like income, education, access to care and even geographic location can shape the entire lupus journey.
📢 We’re kicking off with our latest review in Autoimmunity Reviews: https://t.co/OXq9YGUddD
🧵👇
☀️Have questions about lupus & UV light?
Visit #Lupus100! A reliable source of information, created by patients & lupus experts, that answers the 100 🔝common questions about lupus.
Available in 19 languages!
👍Stay informed. Stay protected. #KickLupus
https://lupus100.org/
😎MYTH: “I’m not photosensitive because I’ve been in the sun & I’m fine.”
🚨 UV sensitivity doesn’t always cause an immediate reaction. Symptoms like rashes, joint pain, or fatigue can appear hours, days, or even weeks later—and in some cases, may trigger a flare.
#KickLupus
📢 New in Aut Rev!
Together with @go-daniel.bsky.social & Laurent Arnaud, we have reviewed 10 years of studies on SDH in #SLE.
This narrative review maps disparities across the patient pathway and offers solutions at each step. From first symptoms to outcomes
www.sciencedirect.com/science/arti...
📢Join the QoC Committee Webinar: "How to manage rheumatic diseases during conception, pregnancy and lactation".
💻Tuesday 30 September 2025, 17:00 - 18:00 CEST
Register here: https://pulse.ly/lnjpyt27fe
#EULAR #Rheumatology #eularEDUCATION #QoC
Thanks @bellamehta.bsky.social & @rheumnow.bsky.social for highlighting #LupusGPT, the first AI tool answering lupus questions with evidence‑based science in almost any language!
If you haven't done it yet, give it a try & let us know what you think!
lupusgpt.org
www.youtube.com/watch?v=lYGY...
🔦 UV light doesn't only come from the sun.
It can also come from
Fluorescent/halogen lights
Some phototherapy lamps
Nail curing lamps
Some medical equipment (dental or dermatology devices)
More ℹ️ in @lupusuk.bsky.social Guide to Artificial Lighting: lupusuk.org.uk/a-guide-to-a...
#KickLupus
🌞 MYTH #1: “Sunscreen on your face is enough.”
❌ False.
With #lupus, UV protection must cover all exposed skin. Not just your face.
‼️Remember! UV rays can penetrate certain types of fabric.
Don’t forget to reapply every 2 hours, after sweating or getting wet.
#KickLupus
🏖️ This week, we’re debunking common myths about UV exposure & #lupus.
💬 Did your doctor ever explain how UV light can affect lupus, and how to protect yourself?
💬 What do you wish doctors had told you about UV exposure and lupus but didn’t?
Let’s #KickLupus!
Thank you for disseminating SLAKE, @resobordeaux.bsky.social!
Don't wait and find out what you really know about #lupus!
maladie-autoimmune.fr/SLAKE/
😨 Did you miss our #EULAR2025 debrief webinar?
😮💨 Don't worry! You can watch the full session at your convenience.
Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page!
www.facebook.com/LupusEurope/...
❤️
17.07.2025 08:38 — 👍 0 🔁 0 💬 0 📌 0
NEW for #LUPUS2025—ERN ReCONNET–SLICC–SLEuro expert consensus on the therapeutic management of rare systemic #lupus erythematosus manifestations bit.ly/3YXEmAO #SLE #Medsky #Rheumsky
Free to read with registration on lancet.com (also free)
🦋 According to our "Living with Lupus in 2020" survey, UV sensitivity ranks among the most common and bothersome symptoms for those living with #lupus.
🔊 Join us! Share how this facet of #SLE limits your daily activities and the strategies you use to #KickLupus and UV light
🌟Thank you to all who attended our #EULAR2025 debrief webinar!
🙌 Especially to our presenters, volunteers & PAN members who shared their insights & experiences.
Stay tuned for more news and updates & don't forget to subscribe to our newsletter! https://www.lupus-europe.org/emails/
⏰ Just 1 hour left for our #EULAR2025 highlights webinar!
😨You haven't registered yet? Don't worry! We have great news for you!
✅ You can still catch all the insights live on our Facebook page https://f.mtr.cool/bufczmhaky
Join us at 18h CET to explore some key takeaways from the Congress!
🌟Our #EULAR2025 highlights webinar is tomorrow!
👨⚕️Some of the presenters will share the main takeaways from their talks.
🦋Also, some of our volunteers and PAN members will share their insights from the Congress.
Don’t miss this opportunity!
Register now by ✉️ secretariat@lupus-europe.org
😃 Yes! The theme for this month is UV light, which is known to have a direct association with lupus.
☀️ Throughout July, we'll be sharing helpful information to understand the importance of avoiding UV exposure if you have lupus.
🔊 Join us and share how you #KickLupus!
NEW RESEARCH—Exposure to #hydroxychloroquine in early #pregnancy and incidence of pre-eclampsia and pre-term delivery in patients with systemic #lupus erythematosus in Sweden: a nationwide population-based cohort study bit.ly/3FBPz3J @rheumepi.bsky.social
Plus, linked Comment bit.ly/3Tknh0D
🌞 Welcome July!
🦵🐺 Summer is in full swing! And we will #KickLupus this month by discussing a crucial topic for everyone affected by lupus.
🤔 Can you guess?
🔊 Stay tuned as we unveil the topic and share some important insights!
📣 Don’t forget!
Our #EULAR2025 Recap Webinar is coming up!
✅ July 10
🕕 18h CET (i.e. Paris time)
Get some highlights from one of our most exciting congresses in recent years, including the Made With Patients Award for LupusGPT!
📩Register now: secretariat@lupus-europe.org
👏 Kudos to our Vice-Chair & Secretary Annemarie Sluijmers, featured in a Dutch article on people who avoid the sun for health reasons.
🌟 What an inspiring story of resilience and advocacy!
Read the full article on @eenvandaag.nl: eenvandaag.avrotros.nl/artikelen/le...
🦋 Thank you to @drminidey.bsky.social from RheumNow for this great interview on #LupusGPT & #EasyLupus!
Don’t miss our Chair, Jeanette Andersen, and Zoe Karakikla-Mitsakou (General Secretary) as they reveal the story behind these innovative AI tools!
www.youtube.com/watch?featur...
Likewise!
It was a pleasure to share how #LupusGPT is breaking barriers in access to valid, lupus information in almost all languages.
Thank you for helping us ensure that every lupus patient, no matter their language or background, has access to trusted information
🤩 So excited about this interview!
💻 #LupusGPT was winning awards at #EULAR2025
🎙️ Delighted to meet with Zoe & Jeanette from #LupusEurope to find out about this exciting development in patient information & use of #AI in #rheumatology
@rheumnow.bsky.social
youtu.be/Iq4w7pwF0f8?...
Thank you! That fishbowl discussion was the spark that led to what is now a globally recognised AI tool. Through the discussion we had, patients and doctors together, we shaped the foundations of #LupusGPT — a real-life example of what can be achieved throguh patient / doctor dialogue ❤️
18.06.2025 14:38 — 👍 0 🔁 0 💬 0 📌 0
