EULAR 2023

 

The European Alliance of Associations for Rheumatology (EULAR) Congress 2023 was incredibly interesting, full of groundbreaking research and information about lupus! EULAR 2023 was also very successful for Lupus Europe and its Patient Advisory Network (PAN) members. With unwavering dedication and hard work, PAN members showed their commitment to supporting the lupus community across Europe.

 

Alain Cornet Wins PARE Best Abstract Award:

Lupus Europe submitted six abstracts at EULAR Congress 2023. Five of these abstracts were accepted with two selected for oral presentation, including the acclaimed “Lupus Europe’s Patient Advisory Network – A Huge Double Success.” The main author, Alain Cornett, was honoured with the prestigious PARE Best Abstract Award.

 

 

 

 

 

 

 

 

The oral presentation was skilfully delivered by PAN member and Board member, Amy Somers.

 

 

Empowering Patients through Lupus100.org:

One of the resounding successes was the spotlight on the Lupus100 project. The abstract “Lupus100.org – A Step Change in Access to Quality Information for European Lupus Patients” was chosen for an oral presentation in the Opening Abstract Plenary Session of the scientific programme!

The oral presentation was delivered by Zoe Karakikla-Mitsakou. This acknowledgement in the scientific programme underscores the importance of the Lupus100 project in providing valid and easy to understand information about lupus in, currently, more than 80% of the native languages of the European population so lupus patients can access valid information about lupus in their own language.

 

 

 

 

 

The potential of Lupus100 as a tool for patients, but also for doctors was highlighted by Francesca Marchiori (PAN member), Lena Koskina (PAN member) and Alain Cornet through “Lupus100.org a new tool for doctors to build patients lupus knowledge and fight poor quality web information” in the scientific poster tour.

 

 

 

 

 

 

 

 

 

Exploring Crucial Aspects of Lupus:

Alain Cornet’s poster tour presentation “Patient-doctor communication gap – Results of a speed-shop on “lupus flare” at Lupus2022 meetings” highlighted the difference between physicians’ and patients’ definition of a lupus flare.

 

Dalila Tremaria’s (PAN member and Board Member) scientific poster presentation on the “Association between diagnosis delay and disease activity with burden of the disease in 4150 European patients with Systemic Lupus Erythematosus”  put a spotlight on the association between diagnosis delay and self-perceived disease activity with the burden of the disease on the daily life of people living with lupus.

 

 

 

 

 

 

 

 

Furthermore, Jeanette Andersen (Lupus Europe Chair) shared her inspirational journey to the specialists of her rheumatic disease in a captivating fishbowl session!

 

 

 

 

 

 

 

 

 

The abstract “Recommendations on handling medicine shortage: learning from Hydroxychloroquine 2020 crisis for  SLE patients” was also accepted for publication.

 

Enthusiastic Presence at the Lupus Europe Booth:

The Lupus Europe booth was a hub of energy and enthusiasm, thanks to the devoted PAN members who tirelessly manned the booth. Their passion for spreading awareness about Lupus Europe, the Lupus100 project and many other Lupus Europe projects was clear to all those who passed by.

 

 

 

 

 

 

 

 

EULAR 2023 Debrief – For People Living with Lupus” Webinar:

Lupus Europe invites you to watch the joint Lupus Europe / ERN ReCONNET webinar on “EULAR 2023 Debrief – for people living with lupus”. Watch the webinar to learn more about Lupus Europe successes at EULAR Congress 2023, hear first-hand from PAN members who took part in the Congress, but also to discover more about the ground-breaking presentations and initiatives that made EULAR 2023 an extraordinary success.

 

Watch the webinar at the Lupus Europe Website Library or by following this link: https://www.lupus-europe.org/videos-on-demand/#iframe-1 

 

 

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Zoe Karakikla-Mitsakou

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    LUPUS EUROPE
    1 day ago
    LUPUS EUROPE

    Only one day left for the great day!

    🌟 Don't miss our webinar on digital health & patient care! 🌟

    ⏲️ Time is running out to secure your spot at our transformative webinar.

    💻 In this rapidly evolving healthcare landscape, digital health is the way forward, and we want you to be at the forefront of this revolution.

    Here's a glimpse of what awaits you:

    ✅ Engage in enriching discussions led by the esteemed Dr. Philipp Bosch.
    ✅ Explore the boundless potential of technology in advancing healthcare.

    🗓️ Date: September 28th (tomorrow!).
    🕗 Time: 20:00 CET.

    This is your opportunity to be part of a digital health revolution that's shaping the future of patient care.

    Join us and empower yourself with the knowledge that can transform lives! 📱🏥

    The webinar will also be streamed live on Facebook. 🎥

    Secure your spot now by registering:
    📧 Email: secretariat@lupus-europe.org

    If you have registered for Zoom already, please ensure you attend via Zoom 🤗.

    See you at the webinar!     ... See MoreSee Less

    Play2023.09.28_Lupus Europe Digital Health webinar.mp4
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    LUPUS EUROPE
    2 days ago
    LUPUS EUROPE

    ‼️ Exercise is not only fundamental to general health but especially vital for individuals facing rheumatic and musculoskeletal diseases (RMDs) like #lupus.

    According to the World Health Organization (WHO), physical inactivity is a significant global health risk, underlining the importance of staying active for overall well-being.

    👩‍⚕️ EULAR, recognising this critical link between physical activity and health, has taken proactive steps by convening a task force to study the impact of lifestyle behaviours, including exercise, on RMDs.

    Their evidence-based recommendations emphasise the undeniable benefits of exercise for individuals dealing with RMDs, including lupus ⬇️:

    1️⃣ Engaging in regular exercise not only promotes general health but also directly impacts RMD symptoms and progression. It's a win-win for your health!

    2️⃣ Exercise significantly improves pain, fatigue, function, and overall quality of life for individuals with RMDs like lupus. Your efforts today can yield a better tomorrow.

    3️⃣ Try to avoid a sedentary lifestyle. Health professionals should urge individuals with RMDs to steer clear of prolonged physical inactivity, as sedentary behaviour is linked to detrimental health effects in both the general population and those with RMDs.

    4️⃣ Aim, at least, for that moderate intensity! Aerobic and strengthening exercises, performed at the right levels, can truly make a difference in managing lupus and its effects on your body.

    5️⃣ Remember, it's never too late to start. Exercise is safe and a step towards enhancing your health, even if you've been less active before. Every step counts!

    6️⃣ Whether in a group or alone, find what works best for you. The community and support can make a difference, but what matters most is finding what motivates you to keep moving.

    🦋 If you're dealing with lupus, know that exercise can be a game-changer for you too, especially for managing symptoms and enhancing your quality of life.

    📷 Embrace the power of exercise in managing lupus and share your journey using #kicklupus.

    Let's inspire and support each other towards a healthier and more active life despite the challenges of lupus! 💪

    ard.bmj.com/content/82/1/48     ... See MoreSee Less

    ‼️ Exercise is not only fundamental to general health but especially vital for individuals facing rheumatic and musculoskeletal diseases (RMDs) like #lupus. According to the World Health Organization (WHO), physical inactivity is a significant global health risk, underlining the importance of staying active for overall well-being. 👩‍⚕️ EULAR, recognising this critical link between physical activity and health, has taken proactive steps by convening a task force to study the impact of lifestyle behaviours, including exercise, on RMDs. Their evidence-based recommendations emphasise the undeniable benefits of exercise for individuals dealing with RMDs, including lupus ⬇️: 1️⃣ Engaging in regular exercise not only promotes general health but also directly impacts RMD symptoms and progression. Its a win-win for your health! 2️⃣ Exercise significantly improves pain, fatigue, function, and overall quality of life for individuals with RMDs like lupus. Your efforts today can yield a better tomorrow. 3️⃣ Try to avoid a sedentary lifestyle. Health professionals should urge individuals with RMDs to steer clear of prolonged physical inactivity, as sedentary behaviour is linked to detrimental health effects in both the general population and those with RMDs. 4️⃣ Aim, at least, for that moderate intensity! Aerobic and strengthening exercises, performed at the right levels, can truly make a difference in managing lupus and its effects on your body. 5️⃣ Remember, its never too late to start. Exercise is safe and a step towards enhancing your health, even if youve been less active before. Every step counts! 6️⃣ Whether in a group or alone, find what works best for you. The community and support can make a difference, but what matters most is finding what motivates you to keep moving. 🦋 If youre dealing with lupus, know that exercise can be a game-changer for you too, especially for managing symptoms and enhancing your quality of life. 📷 Embrace the power of exercise in managing lupus and share your journey using #KickLupus. Lets inspire and support each other towards a healthier and more active life despite the challenges of lupus! 💪 https://ard.bmj.com/content/82/1/48Image attachmentImage attachment+1Image attachment
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    LUPUS EUROPE
    1 week ago
    LUPUS EUROPE

    Physical activity (PA) is crucial for everyone, but it holds even greater importance for individuals dealing with lupus and other chronic autoimmune diseases.

    Lupus presents unique challenges, and maintaining an active lifestyle can significantly impact the well-being of those living with this condition.

    🔵This week, let's highlight the unique benefits of physical activity for individuals with lupus:

    1️⃣ Management of Chronic Conditions: 💪 Regular physical activity can help prevent and manage comorbidities like cardiovascular risk and osteoporosis.

    2️⃣ Pain Management and Mobility: 🏃Exercise has been proven to enhance joint flexibility, reduce pain, and improve mobility in patients with lupus.

    3️⃣ Mental Health and Coping:🧘‍♀️ Exercise can be powerful tool for managing mental health issues like depression and anxiety.

    4️⃣ Maintaining Healthy Weight: ⚖️ Regular physical activity can aid in weight management and contribute to a healthier body mass index, which is crucial for managing lupus symptoms effectively.

    5️⃣ Improving Fatigue Levels: 🏋️ If you live with fatigue, include exercise as part of your treatment!

    6️⃣ Enhancing Bone Health: 🦴 Exercises can improve bone density, helping to mitigate the risk of osteoporosis.

    7️⃣ Empowerment and Self-Efficacy: 🌟 Achieving fitness milestones and goals can boost self-efficacy and provides a sense of accomplishment and confidence.

    🔴 For individuals with lupus, it's essential to work with healthcare professionals to design a personalized exercise plan that takes into account their specific symptoms, limitations, and overall health status. While staying active is beneficial, the type and intensity of exercise should be tailored to the individual to ensure a safe and effective approach to managing lupus.

    That is why we, in collaboration with certified physical therapists, have created a 𝘁𝗮𝗶𝗹𝗼𝗿𝗲𝗱 𝗲𝘅𝗲𝗿𝗰𝗶𝘀𝗲 𝗽𝗿𝗼𝗴𝗿𝗮𝗺. Designed in five levels, this program has received endorsement from renowned European Lupologists. Check it out now! ➡️ www.lupus-europe.org/me-lupus/

    🌈 Your journey to improved well-being can begin with us!

    Let's #kicklupus together!💪

    Always consult a healthcare provider before beginning any exercise regime     ... See MoreSee Less

    Physical activity (PA) is crucial for everyone, but it holds even greater importance for individuals dealing with lupus and other chronic autoimmune diseases. Lupus presents unique challenges, and maintaining an active lifestyle can significantly impact the well-being of those living with this condition. 🔵This week, lets highlight the unique benefits of physical activity for individuals with lupus: 1️⃣ Management of Chronic Conditions: 💪 Regular physical activity can help prevent and manage comorbidities like cardiovascular risk and osteoporosis. 2️⃣ Pain Management and Mobility: 🏃Exercise has been proven to enhance joint flexibility, reduce pain, and improve mobility in patients with lupus. 3️⃣ Mental Health and Coping:🧘‍♀️ Exercise can be powerful tool for managing mental health issues like depression and anxiety. 4️⃣ Maintaining Healthy Weight: ⚖️ Regular physical activity can aid in weight management and contribute to a healthier body mass index, which is crucial for managing lupus symptoms effectively. 5️⃣ Improving Fatigue Levels: 🏋️ If you live with fatigue, include exercise as part of your treatment! 6️⃣ Enhancing Bone Health: 🦴 Exercises can improve bone density, helping to mitigate the risk of osteoporosis. 7️⃣ Empowerment and Self-Efficacy: 🌟 Achieving fitness milestones and goals can boost self-efficacy and provides a sense of accomplishment and confidence. 🔴 For individuals with lupus, its essential to work with healthcare professionals to design a personalized exercise plan that takes into account their specific symptoms, limitations, and overall health status. While staying active is beneficial, the type and intensity of exercise should be tailored to the individual to ensure a safe and effective approach to managing lupus. That is why we, in collaboration with certified physical therapists, have created a 𝘁𝗮𝗶𝗹𝗼𝗿𝗲𝗱 𝗲𝘅𝗲𝗿𝗰𝗶𝘀𝗲 𝗽𝗿𝗼𝗴𝗿𝗮𝗺. Designed in five levels, this program has received endorsement from renowned European Lupologists. Check it out now! ➡️ https://www.lupus-europe.org/me-lupus/ 🌈 Your journey to improved well-being can begin with us! Lets #KickLupus together!💪 Always consult a healthcare provider before beginning any exercise regimeImage attachmentImage attachment+6Image attachment
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    LUPUS EUROPE
    1 week ago
    LUPUS EUROPE

    Last Monday, we held an Interim Review Meeting online with our National Members. We were thrilled to see so many familiar faces! 😃

    During the meeting, we gave an update on the progress of Lupus Europe initiatives and discussed priorities for 2024. We were also delighted to hear from our members about the great activities they are undertaking in their own countries and communities.

    We were astonished by the passion and commitment of our members, and we are grateful for their continued support of Lupus Europe. We know that together, we can support each other as we work towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus💪.

    We want to thank everyone who attended the Interim Review. Your participation and contributions were invaluable. We also want to remind you that our communication channels are always open. Do reach out to us whenever you need anything!

    Together, we are stronger 🙌     ... See MoreSee Less

    Last Monday, we held an Interim Review Meeting online with our National Members. We were thrilled to see so many familiar faces! 😃 During the meeting, we gave an update on the progress of Lupus Europe initiatives and discussed priorities for 2024. We were also delighted to hear from our members about the great activities they are undertaking in their own countries and communities. We were astonished by the passion and commitment of our members, and we are grateful for their continued support of Lupus Europe. We know that together, we can support each other as we work towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus💪. We want to thank everyone who attended the Interim Review. Your participation and contributions were invaluable. We also want to remind you that our communication channels are always open. Do reach out to us whenever you need anything! Together, we are stronger 🙌
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    It was a beautiful and interesting meeting.Thank you all.

    LUPUS EUROPE Uniting people with Lupus throughout Europe
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