Lupus Europe
@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.
🇮🇹 Spotlight on Gruppo Italiano LES!
🌸At our #LupusConvention, our Italian member organisation showcased inspiring initiatives to improve lupus care & awareness. From monthly live broadcasts with lupus experts to supporting clinics & campaigns like Your Voice Matters & SLE is More
🌸At our #LupusConvention, our Italian member organisation showcased inspiring initiatives to improve lupus care & awareness. From monthly live broadcasts with lupus experts to supporting clinics & campaigns like Your Voice Matters & SLE is More
November 11, 2025 at 5:04 PM
🇮🇹 Spotlight on Gruppo Italiano LES!
🌸At our #LupusConvention, our Italian member organisation showcased inspiring initiatives to improve lupus care & awareness. From monthly live broadcasts with lupus experts to supporting clinics & campaigns like Your Voice Matters & SLE is More
🌸At our #LupusConvention, our Italian member organisation showcased inspiring initiatives to improve lupus care & awareness. From monthly live broadcasts with lupus experts to supporting clinics & campaigns like Your Voice Matters & SLE is More
🇮🇸 Spotlight on Lupus Iceland!
At our #LupusConvention, Lupus Iceland's poster showed why patient orgs are essential: they identify unmet needs & work towards practical solutions.
Did you know they import sun protection products, like hats & sunscreen, not sold in Iceland? 😍
At our #LupusConvention, Lupus Iceland's poster showed why patient orgs are essential: they identify unmet needs & work towards practical solutions.
Did you know they import sun protection products, like hats & sunscreen, not sold in Iceland? 😍
November 4, 2025 at 4:51 PM
🇮🇸 Spotlight on Lupus Iceland!
At our #LupusConvention, Lupus Iceland's poster showed why patient orgs are essential: they identify unmet needs & work towards practical solutions.
Did you know they import sun protection products, like hats & sunscreen, not sold in Iceland? 😍
At our #LupusConvention, Lupus Iceland's poster showed why patient orgs are essential: they identify unmet needs & work towards practical solutions.
Did you know they import sun protection products, like hats & sunscreen, not sold in Iceland? 😍
🇧🇪 Spotlight on Lupus Belgium!
At our #LupusConvention, ASBL Lupus Erythematosus Association showcased inspiring initiatives empowering people living with lupus. From yoga & therapeutic workshops to their magazine Le Lien & new website!
👏 Congratulations for your amazing work!
At our #LupusConvention, ASBL Lupus Erythematosus Association showcased inspiring initiatives empowering people living with lupus. From yoga & therapeutic workshops to their magazine Le Lien & new website!
👏 Congratulations for your amazing work!
October 27, 2025 at 4:03 PM
🇧🇪 Spotlight on Lupus Belgium!
At our #LupusConvention, ASBL Lupus Erythematosus Association showcased inspiring initiatives empowering people living with lupus. From yoga & therapeutic workshops to their magazine Le Lien & new website!
👏 Congratulations for your amazing work!
At our #LupusConvention, ASBL Lupus Erythematosus Association showcased inspiring initiatives empowering people living with lupus. From yoga & therapeutic workshops to their magazine Le Lien & new website!
👏 Congratulations for your amazing work!
🦋 #Lupus is a rare autoimmune disease that can potentially impact every aspect of life, From daily activities and social interactions to work and access to support.
✍️ Participate in the #RareBarometer survey by EURORDIS & make your voice heard
🔗 www.sphinxonline.com/surveyserver...
✍️ Participate in the #RareBarometer survey by EURORDIS & make your voice heard
🔗 www.sphinxonline.com/surveyserver...
October 24, 2025 at 3:40 PM
🦋 #Lupus is a rare autoimmune disease that can potentially impact every aspect of life, From daily activities and social interactions to work and access to support.
✍️ Participate in the #RareBarometer survey by EURORDIS & make your voice heard
🔗 www.sphinxonline.com/surveyserver...
✍️ Participate in the #RareBarometer survey by EURORDIS & make your voice heard
🔗 www.sphinxonline.com/surveyserver...
🧵 THREAD
📢 Our latest study, co-led by Dr @go-daniel.bsky.social & Zoe Karakikla-Mitsakou, takes a comprehensive look at how SDH shape every stage of the patient pathway.
💎 It also proposes practical solutions to improve health equity & outcomes.
t.co/OXq9YGUddD
#1month1study
📢 Our latest study, co-led by Dr @go-daniel.bsky.social & Zoe Karakikla-Mitsakou, takes a comprehensive look at how SDH shape every stage of the patient pathway.
💎 It also proposes practical solutions to improve health equity & outcomes.
t.co/OXq9YGUddD
#1month1study
October 22, 2025 at 9:02 AM
🧵 THREAD
📢 Our latest study, co-led by Dr @go-daniel.bsky.social & Zoe Karakikla-Mitsakou, takes a comprehensive look at how SDH shape every stage of the patient pathway.
💎 It also proposes practical solutions to improve health equity & outcomes.
t.co/OXq9YGUddD
#1month1study
📢 Our latest study, co-led by Dr @go-daniel.bsky.social & Zoe Karakikla-Mitsakou, takes a comprehensive look at how SDH shape every stage of the patient pathway.
💎 It also proposes practical solutions to improve health equity & outcomes.
t.co/OXq9YGUddD
#1month1study
At our #LupusConvention, our Czech member organisation impressed us with an inspiring poster showcasing their wide range of initiatives for people with lupus. From psychological support to exercise, they cover it all!
Congratulations, & keep it up!
Congratulations, & keep it up!
October 20, 2025 at 2:07 PM
At our #LupusConvention, our Czech member organisation impressed us with an inspiring poster showcasing their wide range of initiatives for people with lupus. From psychological support to exercise, they cover it all!
Congratulations, & keep it up!
Congratulations, & keep it up!
✅ Do you want to know more about topics like fatigue or CAR-T cells?
🎥 Find them all on our website!
🌟 Expert talks, patient perspectives, research updates, event highlights... Our video section has it all so you can watch it anytime!
https://www.lupus-europe.org/videos-on-demand/
🎥 Find them all on our website!
🌟 Expert talks, patient perspectives, research updates, event highlights... Our video section has it all so you can watch it anytime!
https://www.lupus-europe.org/videos-on-demand/
October 18, 2025 at 1:01 PM
✅ Do you want to know more about topics like fatigue or CAR-T cells?
🎥 Find them all on our website!
🌟 Expert talks, patient perspectives, research updates, event highlights... Our video section has it all so you can watch it anytime!
https://www.lupus-europe.org/videos-on-demand/
🎥 Find them all on our website!
🌟 Expert talks, patient perspectives, research updates, event highlights... Our video section has it all so you can watch it anytime!
https://www.lupus-europe.org/videos-on-demand/
🚨Attention lupus researchers!
Last chance to register for the €500 Lupus Europe Poster Award at #Lupus2026!
Registration closes on the 20th Oct!
During the submission process, you will be asked to indicate whether you would like to run for the award.
Last chance to register for the €500 Lupus Europe Poster Award at #Lupus2026!
Registration closes on the 20th Oct!
During the submission process, you will be asked to indicate whether you would like to run for the award.
Lupus 2026 - Abstract
Choose between oral or e-poster presentation. Visit the website for more information about the deadline, the structure and notification of acceptance.
www.sleuromeeting.eu
October 17, 2025 at 3:40 PM
🚨Attention lupus researchers!
Last chance to register for the €500 Lupus Europe Poster Award at #Lupus2026!
Registration closes on the 20th Oct!
During the submission process, you will be asked to indicate whether you would like to run for the award.
Last chance to register for the €500 Lupus Europe Poster Award at #Lupus2026!
Registration closes on the 20th Oct!
During the submission process, you will be asked to indicate whether you would like to run for the award.
✅ Great news!
🙌 New @eular.org 2025 recommendations for the management of SLE with kidney Involvement have just been published in @ard.eular.org.
Congrats to all authors for this amazing work!
https://ard.eular.org/article/S0003-4967(25)04412-7/fulltext
🙌 New @eular.org 2025 recommendations for the management of SLE with kidney Involvement have just been published in @ard.eular.org.
Congrats to all authors for this amazing work!
https://ard.eular.org/article/S0003-4967(25)04412-7/fulltext
October 17, 2025 at 12:59 PM
✅ Great news!
🙌 New @eular.org 2025 recommendations for the management of SLE with kidney Involvement have just been published in @ard.eular.org.
Congrats to all authors for this amazing work!
https://ard.eular.org/article/S0003-4967(25)04412-7/fulltext
🙌 New @eular.org 2025 recommendations for the management of SLE with kidney Involvement have just been published in @ard.eular.org.
Congrats to all authors for this amazing work!
https://ard.eular.org/article/S0003-4967(25)04412-7/fulltext
🦋 What’s the purpose behind Lupus Europe attending scientific meetings?
🌈 It’s about staying informed & informing the lupus community, building projects & more.
We tell you all about it out here!👇
www.facebook.com/LupusEurope/...
www.instagram.com/p/DP1tilwjYxG/
www.linkedin.com/posts/lupus-...
🌈 It’s about staying informed & informing the lupus community, building projects & more.
We tell you all about it out here!👇
www.facebook.com/LupusEurope/...
www.instagram.com/p/DP1tilwjYxG/
www.linkedin.com/posts/lupus-...
October 16, 2025 at 3:52 PM
🦋 What’s the purpose behind Lupus Europe attending scientific meetings?
🌈 It’s about staying informed & informing the lupus community, building projects & more.
We tell you all about it out here!👇
www.facebook.com/LupusEurope/...
www.instagram.com/p/DP1tilwjYxG/
www.linkedin.com/posts/lupus-...
🌈 It’s about staying informed & informing the lupus community, building projects & more.
We tell you all about it out here!👇
www.facebook.com/LupusEurope/...
www.instagram.com/p/DP1tilwjYxG/
www.linkedin.com/posts/lupus-...
🚨Due to exceptional circumstances, 2 spots have become available!
If you’re a man living with lupus in Europe, don’t miss this chance to join this unique initiative!
✈️Reasonable travel expenses & accommodation covered.
📩Just email secretariat@lupus-europe.org & let us know!
If you’re a man living with lupus in Europe, don’t miss this chance to join this unique initiative!
✈️Reasonable travel expenses & accommodation covered.
📩Just email secretariat@lupus-europe.org & let us know!
October 14, 2025 at 3:52 PM
🚨Due to exceptional circumstances, 2 spots have become available!
If you’re a man living with lupus in Europe, don’t miss this chance to join this unique initiative!
✈️Reasonable travel expenses & accommodation covered.
📩Just email secretariat@lupus-europe.org & let us know!
If you’re a man living with lupus in Europe, don’t miss this chance to join this unique initiative!
✈️Reasonable travel expenses & accommodation covered.
📩Just email secretariat@lupus-europe.org & let us know!
💜 What an inspiring poster by Andri, from CYLPER, at the #LupusConvention!
🗣️ “My Voice Has Space” creates a safe environment for people with lupus to share their experiences freely.
💡 “My Voice Becomes Action” turns those voices into creation, connection & mobilisation.
🗣️ “My Voice Has Space” creates a safe environment for people with lupus to share their experiences freely.
💡 “My Voice Becomes Action” turns those voices into creation, connection & mobilisation.
October 13, 2025 at 3:03 PM
💜 What an inspiring poster by Andri, from CYLPER, at the #LupusConvention!
🗣️ “My Voice Has Space” creates a safe environment for people with lupus to share their experiences freely.
💡 “My Voice Becomes Action” turns those voices into creation, connection & mobilisation.
🗣️ “My Voice Has Space” creates a safe environment for people with lupus to share their experiences freely.
💡 “My Voice Becomes Action” turns those voices into creation, connection & mobilisation.
🚨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/
☝️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/
October 10, 2025 at 10:30 AM
🚨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/
☝️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/
📍 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!
😄 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!
October 9, 2025 at 5:02 PM
📍 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!
😄 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!
💬 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
✨ 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
October 6, 2025 at 9:42 AM
💬 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
✨ 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
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
Economic evaluation should include direct, indirect & intangible costs, according to Giuseppe Turchetti from ERN ReCONNET
#LupusConvention
October 6, 2025 at 7:59 AM
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
Economic evaluation should include direct, indirect & intangible costs, according to Giuseppe Turchetti from ERN ReCONNET
#LupusConvention
💜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!
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!
October 6, 2025 at 7:48 AM
💜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!
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!
🦋 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!
💜 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!
October 5, 2025 at 3:30 PM
🦋 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!
💜 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!
🌳 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
🌈 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
October 5, 2025 at 2:19 PM
🌳 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
🌈 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
💜 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
🙌 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
October 5, 2025 at 11:25 AM
💜 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
🙌 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
‼️ 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
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
October 4, 2025 at 4:07 PM
‼️ 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
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
💜 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!
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!
October 4, 2025 at 4:05 PM
💜 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!
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!
🖼️ 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
💜 Our members showcase their projects, sharing ideas and experiences from across Europe — and our Youth Group presents a thought-provoking poster on Sex & Lupus
October 4, 2025 at 4:04 PM
🖼️ 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
💜 Our members showcase their projects, sharing ideas and experiences from across Europe — and our Youth Group presents a thought-provoking poster on Sex & Lupus
🚨 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!
🌟 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!
October 4, 2025 at 2:46 PM
🚨 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!
🌟 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!
💁♀️ 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! 💜
✅ 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! 💜
October 4, 2025 at 2:37 PM
💁♀️ 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! 💜
✅ 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! 💜