We are thrilled to share some exciting news from the recent GlobalSkin ELEVATE Conference in Brussels, where Annemarie Sluijmers, Vice Chair and Secretary of Lupus Europe, was honoured with the prestigious GlobalSkin Patient Leaders Award. The conference, held from June 1 to 4, brought together experts, researchers, and patient advocates from the field of dermatology to discuss and strengthen connections across world regions and disease areas. During this event, Annemarie received the Collaborator Award for her outstanding contributions to the GlobalSkin Europe Community. Let’s take a closer look at Annemarie’s work with GlobalSkin and at how Lupus Europe is making a difference in raising awareness for skin-related issues in Lupus.

 

Group picture of delegates from ELEVATE 2023 ConferenceLupus Europe has been collaborating with the GlobalSkin community, the International Alliance of Dermatologic Patient Organisations (IADPO). IADPO has many members, the majority of whom are patient organisations in Europe. IADPO’s focus is on skin-related conditions, on uniting the voices of European Rare Skin Patients and on advocating for medical dermatology to be prioritised on the European policy agenda.

 

 

 

Photo from GlobalSkin ELEVATE Conference; you can find it: https://www.flickr.com/photos/iadpo/albums 

 

Annemarie Sluijmers plays a pivotal role in this collaboration between Lupus Europe and IADPO. Annemarie is a Vice Chair and Secretary of Lupus Europe and she is also a member of the Advisory Committee of GlobalSkin-Europe. This platform brings  together patient advocates, dermatologists, and policymakers to work towards common goals. Additionally, Annemarie is also a member of the Advisory Committee of RareDERM and the Steering Committee of the World Skin Health Coalition.

 

Highlights from the ELEVATE Conference:

 

  • The ELEVATE 2023 conference offered valuable insights into various aspects of dermatology, research, and advocacy. Here are some key takeaways:

 

  • The Importance of Data: Experts emphasised the significance of global data for (rare) skin diseases, requiring unique codes compatible with different IT systems.

 

4-four-things-change-dermatology

    Photo from GlobalSkin ELEVATE Conference; you can find it: https://www.flickr.com/photos/iadpo/albums 

  • AI and Non-Invasive Imaging: AI technology has potential applications beyond primary care skin cancer, offering non-invasive imaging for various dermatological conditions.

 

  • LC-OCT: Line-field confocal optical coherence could be a promising alternative to skin biopsies.

 

  • Personalised Medicine: The conference highlighted the importance of personalised medicine, including the sterilisation and re-use of single-use instruments and using medications beyond their expiration date.

 

Recognising Outstanding Contributions:

During the ELEVATE Conference, Lupus Europe’s very own Annemarie Sluijmers received the Collaborator Award for her dedication to the GlobalSkin Europe Community.

Photo of Annemarie Sluijmers receiving the Collaborate award during the ELEVATE 2023 Conference

 

 

 

 

 

 

 

 

    Photo from GlobalSkin ELEVATE Conference; you can find it:

https://www.flickr.com/photos/iadpo/albums 

 

This was said about her: “Annemarie is Board Member of Lupus Europe. She is a devoted patient advocate and a committed supporter of the GlobalSkin Europe activities. She consistently provides insights and share ideas, precious for the whole community. I must also stress that she is a diligent Eupati fellow. Annemarie is very active not only at the national, but also at the European level.

 

 

GRIDD Study: 

 

If you have skin lupus or involvement of the skin while having SLE, do participate in the GRIDD study survey. You can find the GRIDD study survey at the following link: https://www.my.crf.one/en/Public/RegisterSurvey/279e953a-b9be-4b2c-9b5c-f1e32a25bb59

 

Your input will contribute to furthering the understanding of these conditions and their true impact. Collaboration and data play crucial roles in improving the lives of those affected by skin diseases

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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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