20th annual European Congress of Rheumatology took place in Madrid in June 2019. The Congress was hosted by the European League Against Rheumatism (EULAR) and jointly organised with the Paediatric Rheumatology European Society (PReS). There were 14,500 attendees from 120 countries and the scientific programme included presentations from 4,900 abstracts submitted.

Three Trustees attended the Congress to hear the latest news in Lupus research and to represent Lupus Europe and network with different partners; industry, researchers, physicians, patients, HCPs etc. (i.e. from our Lupus Europe booth).

Our Chair Jeanette Andersen gave two presentations at the PARE session called: Should we worry about anything else – also young people have multi-morbidities. The first presentation was called “Diseases on sale – how I deal with all my conditions”, the second one was on the “Lupus Europe Youth Panel – what we learned from young people living with lupus”. She also presented a poster on her Exercise program for lupus patients.

 

In the scientific programme Ronald von Vollenhoven presented about the success of Phase 2b Global Clinical Trial of Ustekinumab (UST) for SLE that started in 2018. The SLE Responder Index SRI showed the best result – UST 62% compared with placebo 33%. Most improvement was noticed after week 24. Ustekinumab provided sustained clinical benefit across global and organ-specific SLE-disease activity measures and reduced flares through 48 weeks. The randomised, placebo-controlled, crossover study will continue being further evaluated. This is an interesting to follow!

Thomas Dörner presented novel paradigms in the management of SLE. The recently developed new classification criteria for SLE have been revised to exclude SLE mimickers and to diagnose a truly autoimmune systemic lupus, suitable for early diagnosis.

 

Definitions of remission and low disease activity in SLE (LLDAS) have been proposed and validated against outcomes such as glucocorticoid usage, damage accrual and quality of life. Both targets are associated with improved outcomes, however at present persistence in remission is not common. The achievement of LLDAS is not rare, persistence in LLDAS is achievable.

In 2019, Belimumab (Benlysta) met the endpoint in four trials. It proved to increase quality of life and prevent organ damage. It has also been approved for use in children.

In the GSK Satellite Symposium: From today’s reality, to tomorrow’s “Vision for Lupus” the presenters told about the “Vision for Lupus” project, where a global multidisciplinary Steering Committee comprising a person with lupus, a patient advocacy expert, representation from international lupus patient organisations and clinicians specialising in the condition to discuss the future. The mission of the project was to identify the current gaps and inconsistencies in lupus care, consider what we want lupus care to look like in the future and how to get there. You can read more about the results of the vision for lupus report on the website: https://www.visionforlupus.org

 

There was a huge interest in the Lupus Europe Exercise programme for lupus patients from both patients, physicians and HPRs. They all mentioned, that this programme would be useful for all rheumatic diseases. Professor Marta Mosca saw a small preview of the videos and was very excited! She wants the ERNs not only to endorse the programme but also to distribute it. Exercise as a form of treatment for people with RMDs was an overall topic of this year´s EULAR programme.

Alice Grosjean, who started the Sjögren Europe in March this year presented her group at a PARE session. In her presentation of “Setting up a European federation of Sjögrens Syndrome” she acknowledged Lupus Europe as a big help and inspiration. Here is a link to their website: http://sjogreneurope.org

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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

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

1 CommentComment on Facebook

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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
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 🙌

1 CommentComment on Facebook

It was a beautiful and interesting meeting.Thank you all.

LUPUS EUROPE Uniting people with Lupus throughout Europe
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