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Lupus Europe @lupuseurope.bsky.social · 12h

🚨Today is #WorldMentalHealthDay.

☝️Do you know that #lupus patients are at high risk of anxiety and #depression?

Always talk to your physician about how you feel. Addressing mental health problems promptly is key.

🦋 Know more. Visit #LupusGPT

https://lupusgpt.org/

Lupus Europe @lupuseurope.bsky.social · 1d

📍 We’re in the 6th #3TR Meeting!

😄 At Lupus Europe, we’re proud to have four patient representatives in the Patient Advisory Committee, making sure that the voices & experiences of people living with lupus are included.

Thank you for involving patients in research!

Lupus Europe @lupuseurope.bsky.social · 4d

💬 The message can be good, but it gets lost if communication isn’t clear or focused.

✨ Our Organisation Coach, Alain Cornet, delivers the last session of our #LupusConvention to show how message tracks help keep our communication focused, collaborative and impactful

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Lupus Europe @lupuseurope.bsky.social · 4d

Factors like diagnosis delay, organ damage, age, disease activity, flares & socioeconomic status can have an impact on direct costs of lupus.

Economic evaluation should include direct, indirect & intangible costs, according to Giuseppe Turchetti from ERN ReCONNET

#LupusConvention

Lupus Europe @lupuseurope.bsky.social · 4d

💜Last day of our #LupusConvention!

Giuseppe Turchetti from ERN ReCONNET joins us to discuss the ongoing collaboration with Lupus Europe to build a more structured, coordinated, patient-centred approach to lupus care, & a joint project on the economic cost of lupus.

😃Stay tuned!

Lupus Europe @lupuseurope.bsky.social · 5d

🦋 Dr @go-daniel.bsky.social has just finished an amazing Meet the Doctor session full of great questions and discussions!

💜 A huge thank you to Dr Daniel Guimarães de Oliveira for his outstanding support and full dedication throughout our #LupusConvention. You went the extra mile!

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Lupus Europe @lupuseurope.bsky.social · 5d

🌳 Yesterday, our tree showed Lupus Europe’s achievements.

🌈 Today, our members added theirs — and it’s now full of life.

✨ What a beautiful symbol of everything we can achieve together as one strong, connected lupus community across Europe!

#LupusConvention

Lupus Europe @lupuseurope.bsky.social · 5d

💜 In a #LupusConvention themed “Every Voice Matters,” our Youth Group couldn’t be missing!

🙌 During their session, they shared key challenges that call for a youth-specific space and showed how young voices can bring fresh perspectives and drive change into lupus care

Lupus Europe @lupuseurope.bsky.social · 6d

‼️ Men with lupus face unique challenges that deserve attention.

Andreas Panteli presents a poster on Men and Lupus, highlighting the importance of recognising their specific needs and experiences.

👀 Stay tuned for our upcoming Patient Panel for Men!

#LupusConvention

Lupus Europe @lupuseurope.bsky.social · 6d

💜 We are so proud of our members!

This Poster Tour at our #LupusConvention shows the creativity, commitment & synergies of our national member groups.

🦋 From running events to patient education projects, this session is proof of the incredible potential of patient advocates!

Lupus Europe @lupuseurope.bsky.social · 6d

🖼️ The Poster Tour begins at our #LupusConvention!

💜 Our members showcase their projects, sharing ideas and experiences from across Europe — and our Youth Group presents a thought-provoking poster on Sex & Lupus

Lupus Europe @lupuseurope.bsky.social · 6d

🚨 We all have biases.

🌟 At #LupusConvention, Andreas Panteli from Lupus Suisse invites us to recognise them — and to step beyond them, so we can better understand, represent and support the lupus community.

🌈 What an amazing session!

Lupus Europe @lupuseurope.bsky.social · 6d

💁‍♀️ Our Chair Jeanette Andersen leads the HTA Summit Introduction at #LupusConvention 2025!

✅ A perfect occasion for our delegates to explore how HTA can strengthen patient advocacy.

We hope many will join us at the upcoming HTA Summit! 💜

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Lupus Europe @lupuseurope.bsky.social · 6d

💜 It’s time for the parallel workshops at our #LupusConvention 2025!

🗣️Delegates are working in groups to share ideas, experiences and solutions around this year’s theme: Every Voice Matters.

Such an enriching moment of exchange and learning from each other!

Lupus Europe @lupuseurope.bsky.social · 6d

😃 Dr @go-daniel.bsky.social explores now how social determinants of health —income, education, geography, health literacy & stigma—shape lupus outcomes from diagnosis to long-term care.

Based on our joint review, co-authored by patients & clinicians https://t.co/OXq9YGUddD

#LupusConvention

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Lupus Europe @lupuseurope.bsky.social · 6d

🩺Important message from Dr Maarten Limper: “New is not necessarily better.”

With new options like CAR-T emerging, it’s key to remember that old doesn’t mean outdated or worse: established treatments bring years of experience & safety data. The more, the better!
#LupusConvention

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Lupus Europe @lupuseurope.bsky.social · 6d

🤩 Dr Maarten Limper takes the stage at our #LupusConvention!

✅ From new #EULAR, ACR & KDIGO lupus nephritis guidelines to advances like anifrolumab & CAR-T, he shows how far science has come — & the key role of European Reference Networks in connecting expertise across borders

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Lupus Europe @lupuseurope.bsky.social · 6d

💜 It’s official — our #LupusConvention 2025 is now open!

Our Chair Jeanette Andersen kicked things off with an inspiring message under this year’s theme: “Every Voice Matters.”

✨ We’re thrilled to see so many delegates from across Europe joining us in person!

Lupus Europe @lupuseurope.bsky.social · 7d

🎉It’s here! Our #LupusConvention starts today - The theme: Every Voice Matters.

💜Workshops, talks & sessions on every aspect of this theme with delegates from across Europe. Let's move closer to a fulfilling life for all people with lupus, until we reach a world without lupus

Lupus Europe @lupuseurope.bsky.social · 9d

What makes this work special?

It’s led by a doctor & a patient—Dr @go-daniel.bsky.social & Zoe Karakikla-Mitsakou—who contributed equally.

Together with the amazing Prof Laurent Arnaud & Lena Koskina, they reviewed 10 years of research & proposed solutions at every step.

https://t.co/OXq9YGUddD

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Lupus Europe @lupuseurope.bsky.social · 9d

🍂Welcome, October!

This month, #1month1study focuses on social determinants of health (SDH)- factors like income, education & access to care that can shape the entire lupus journey.

📢 We’re kicking off with our latest review in Autoim Reviews: https://t.co/OXq9YGUddD

🧵👇

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Lupus Europe @lupuseurope.bsky.social · 10d

🥰 Hug, kiss & love your loved ones. Nothing to worry about!

Russian lupus100.org/ru/questions...
🇷🇸 lupus100.org/sr/questions...
🇫🇮 lupus100.org/fi/questions...
🇺🇦 lupus100.org/uk/questions...

🌍 Don’t see your language? Visit lupusgpt.org, ask your question, & share the answer in your own language

Lupus Europe @lupuseurope.bsky.social · 10d

❌ It's impossible to get infected by #lupus.

🇫🇷 rhumatismes.net/index.php?id...
🇮🇹 lupus100.org/it/questions...
🇱🇹 lupus100.org/lt/questions...
🇳🇱 lupus100.org/nl/questions...
🇳🇴 lupus100.org/nb/questions...
🇵🇹 lupus100.org/pt/questions...
🇷🇴 lupus100.org/ro/questions...

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Lupus Europe @lupuseurope.bsky.social · 10d

❌ Lupus is NOT contagious.

🇬🇧 lupus100.org/en/questions...
🇧🇬 lupus100.org/bg/questions...
Catalan lupus100.org/ca/questions...
🇨🇿 lupus100.org/cs/questions...
🇩🇰 lupus100.org/da/questions...
🇩🇪 lupus100.org/de/questions...
🇬🇷 lupus100.org/el/questions...
🇪🇸 lupus100.org/es/questions...

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Lupus Europe @lupuseurope.bsky.social · 10d

🦋 We can say it louder, we can say it clearer… &, with #Lupus100, also in 19 languages!

❌ Lupus is NOT contagious.

✨ Help break the myth:

-Share a post on social media
-Use lupus100.org to find the explanation in your language and share -links in this thread! ⤵️

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