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.
📣 TODAY, our General Secretary, Zoe Karakikla-Mitsakou, will present #LupusGPT at the ERN ReCONNET Sharing Good Practice Initiative 2025!
🗓️ 1 Dec, 15:00–17:00 CET
💻 Online
🔗 Register: reconnet.ern-net.eu/2025/11/24/r...
Proud to see patient-led innovation recognised at European level!
🗓️ 1 Dec, 15:00–17:00 CET
💻 Online
🔗 Register: reconnet.ern-net.eu/2025/11/24/r...
Proud to see patient-led innovation recognised at European level!
December 1, 2025 at 9:10 AM
📣 TODAY, our General Secretary, Zoe Karakikla-Mitsakou, will present #LupusGPT at the ERN ReCONNET Sharing Good Practice Initiative 2025!
🗓️ 1 Dec, 15:00–17:00 CET
💻 Online
🔗 Register: reconnet.ern-net.eu/2025/11/24/r...
Proud to see patient-led innovation recognised at European level!
🗓️ 1 Dec, 15:00–17:00 CET
💻 Online
🔗 Register: reconnet.ern-net.eu/2025/11/24/r...
Proud to see patient-led innovation recognised at European level!
🌟 Incredible experience at the HMA/EMA_News AI Workshop!
💜 Huge thanks to the organisers and congrats to Alain Cornet for his outstanding Keynote on #LupusGPT: a patient-built tool now used by patients & HCPs around the world.
🚀 More upgrades are coming. Stay tuned!
💜 Huge thanks to the organisers and congrats to Alain Cornet for his outstanding Keynote on #LupusGPT: a patient-built tool now used by patients & HCPs around the world.
🚀 More upgrades are coming. Stay tuned!
November 28, 2025 at 12:33 PM
🌟 Incredible experience at the HMA/EMA_News AI Workshop!
💜 Huge thanks to the organisers and congrats to Alain Cornet for his outstanding Keynote on #LupusGPT: a patient-built tool now used by patients & HCPs around the world.
🚀 More upgrades are coming. Stay tuned!
💜 Huge thanks to the organisers and congrats to Alain Cornet for his outstanding Keynote on #LupusGPT: a patient-built tool now used by patients & HCPs around the world.
🚀 More upgrades are coming. Stay tuned!
🌟We were at the @eular.org #PARE Conference 2025!
😃 Proud to have our Chair, Jeanette Andersen, representing the European #lupus community.
Being present in this important event helps us amplify the patient voice, shape future research, strengthen the PRP network & much more!
😃 Proud to have our Chair, Jeanette Andersen, representing the European #lupus community.
Being present in this important event helps us amplify the patient voice, shape future research, strengthen the PRP network & much more!
November 24, 2025 at 2:30 PM
🌟We were at the @eular.org #PARE Conference 2025!
😃 Proud to have our Chair, Jeanette Andersen, representing the European #lupus community.
Being present in this important event helps us amplify the patient voice, shape future research, strengthen the PRP network & much more!
😃 Proud to have our Chair, Jeanette Andersen, representing the European #lupus community.
Being present in this important event helps us amplify the patient voice, shape future research, strengthen the PRP network & much more!
🌟 New milestone!
Lupus Europe has been invited to the HMA/ @ema.europa.eu Multi-Stakeholder Workshop on AI.
🎤 #LupusGPT, a patient-driven tool, is recognised alongside major regulatory and industry innovations.
👀 Don't miss the event! Watch it at www.ema.europa.eu/en/events/hm...
Lupus Europe has been invited to the HMA/ @ema.europa.eu Multi-Stakeholder Workshop on AI.
🎤 #LupusGPT, a patient-driven tool, is recognised alongside major regulatory and industry innovations.
👀 Don't miss the event! Watch it at www.ema.europa.eu/en/events/hm...
November 18, 2025 at 12:13 PM
🌟 New milestone!
Lupus Europe has been invited to the HMA/ @ema.europa.eu Multi-Stakeholder Workshop on AI.
🎤 #LupusGPT, a patient-driven tool, is recognised alongside major regulatory and industry innovations.
👀 Don't miss the event! Watch it at www.ema.europa.eu/en/events/hm...
Lupus Europe has been invited to the HMA/ @ema.europa.eu Multi-Stakeholder Workshop on AI.
🎤 #LupusGPT, a patient-driven tool, is recognised alongside major regulatory and industry innovations.
👀 Don't miss the event! Watch it at www.ema.europa.eu/en/events/hm...
🌈 Exciting news!
🎙️ We’ve launched Lupus Europe: The Podcast!
A new project and a new step forward to bring our studies, projects and research to all audiences, making science clear, accessible and truly patient-friendly.
🎧 First episode is live. Listen now!
open.spotify.com/show/3yMLxGT...
🎙️ We’ve launched Lupus Europe: The Podcast!
A new project and a new step forward to bring our studies, projects and research to all audiences, making science clear, accessible and truly patient-friendly.
🎧 First episode is live. Listen now!
open.spotify.com/show/3yMLxGT...
November 14, 2025 at 4:40 PM
🌈 Exciting news!
🎙️ We’ve launched Lupus Europe: The Podcast!
A new project and a new step forward to bring our studies, projects and research to all audiences, making science clear, accessible and truly patient-friendly.
🎧 First episode is live. Listen now!
open.spotify.com/show/3yMLxGT...
🎙️ We’ve launched Lupus Europe: The Podcast!
A new project and a new step forward to bring our studies, projects and research to all audiences, making science clear, accessible and truly patient-friendly.
🎧 First episode is live. Listen now!
open.spotify.com/show/3yMLxGT...
🇮🇹 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...
🌟 The study, co-led by first authors Dr @go-daniel.bsky.social & Zoe Karakikla-Mitsakou (patient & General Secretary of Lupus Europe), with 🔝 Prof Laurent Arnaud & Lena Koskina, shows what’s possible when patients and doctors work together as equals
📚Read it www.sciencedirect.com/science/arti...
📚Read it www.sciencedirect.com/science/arti...
October 22, 2025 at 9:03 AM
🌟 The study, co-led by first authors Dr @go-daniel.bsky.social & Zoe Karakikla-Mitsakou (patient & General Secretary of Lupus Europe), with 🔝 Prof Laurent Arnaud & Lena Koskina, shows what’s possible when patients and doctors work together as equals
📚Read it www.sciencedirect.com/science/arti...
📚Read it www.sciencedirect.com/science/arti...
4️⃣ How SDH affect lupus outcomes
SDH influence not only how lupus begins, but also how it evolves over time.
Low income, low education, limited access to care, & lower socioeconomic backgrounds are linked to ⬆️ disease activity, more flares & greater organ damage
#1Month1Study
SDH influence not only how lupus begins, but also how it evolves over time.
Low income, low education, limited access to care, & lower socioeconomic backgrounds are linked to ⬆️ disease activity, more flares & greater organ damage
#1Month1Study
October 22, 2025 at 9:02 AM
4️⃣ How SDH affect lupus outcomes
SDH influence not only how lupus begins, but also how it evolves over time.
Low income, low education, limited access to care, & lower socioeconomic backgrounds are linked to ⬆️ disease activity, more flares & greater organ damage
#1Month1Study
SDH influence not only how lupus begins, but also how it evolves over time.
Low income, low education, limited access to care, & lower socioeconomic backgrounds are linked to ⬆️ disease activity, more flares & greater organ damage
#1Month1Study
3️⃣ SDH & prognosis
Low income & unemployment are linked to more severe manifestations & ⬆️ damage.
Also limit access to 💊, appointments & follow-up, leading to ⬆️ disease activity, flares & ⬆️damage.
Financial stress, unemployment, & social isolation can affect mental health
Low income & unemployment are linked to more severe manifestations & ⬆️ damage.
Also limit access to 💊, appointments & follow-up, leading to ⬆️ disease activity, flares & ⬆️damage.
Financial stress, unemployment, & social isolation can affect mental health
October 22, 2025 at 9:02 AM
3️⃣ SDH & prognosis
Low income & unemployment are linked to more severe manifestations & ⬆️ damage.
Also limit access to 💊, appointments & follow-up, leading to ⬆️ disease activity, flares & ⬆️damage.
Financial stress, unemployment, & social isolation can affect mental health
Low income & unemployment are linked to more severe manifestations & ⬆️ damage.
Also limit access to 💊, appointments & follow-up, leading to ⬆️ disease activity, flares & ⬆️damage.
Financial stress, unemployment, & social isolation can affect mental health
2️⃣ How SDH affect lupus management
Low income, limited health literacy, language barriers or caregiving responsibilities (affects mainly women) can reduce access to medication, appointments, and follow-up, leading to irregular treatment & worse disease control.
#1Month1Study
Low income, limited health literacy, language barriers or caregiving responsibilities (affects mainly women) can reduce access to medication, appointments, and follow-up, leading to irregular treatment & worse disease control.
#1Month1Study
October 22, 2025 at 9:02 AM
2️⃣ How SDH affect lupus management
Low income, limited health literacy, language barriers or caregiving responsibilities (affects mainly women) can reduce access to medication, appointments, and follow-up, leading to irregular treatment & worse disease control.
#1Month1Study
Low income, limited health literacy, language barriers or caregiving responsibilities (affects mainly women) can reduce access to medication, appointments, and follow-up, leading to irregular treatment & worse disease control.
#1Month1Study
1️⃣ SDH 🆚 presentation & diagnosis (example)
Patients from ⬇️income or minority backgrounds often face delays in diagnosis due to limited access to specialists, low health literacy or stigma.
As a result, lupus may be more severe, with organ damage, at diagnosis
#1Month1Study
Patients from ⬇️income or minority backgrounds often face delays in diagnosis due to limited access to specialists, low health literacy or stigma.
As a result, lupus may be more severe, with organ damage, at diagnosis
#1Month1Study
October 22, 2025 at 9:02 AM
1️⃣ SDH 🆚 presentation & diagnosis (example)
Patients from ⬇️income or minority backgrounds often face delays in diagnosis due to limited access to specialists, low health literacy or stigma.
As a result, lupus may be more severe, with organ damage, at diagnosis
#1Month1Study
Patients from ⬇️income or minority backgrounds often face delays in diagnosis due to limited access to specialists, low health literacy or stigma.
As a result, lupus may be more severe, with organ damage, at diagnosis
#1Month1Study
🧵 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/
✅ 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 [email protected] & 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 [email protected] & 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 [email protected] & 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 [email protected] & 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