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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3 days ago

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🌍 Socio-economic factors can significantly impact the health outcomes of people with SLE, particularly those from economically or socially disadvantaged backgrounds. A multitude of issues such as limited access to transportation, low health literacy, insufficient healthcare resources can influence various aspects of access to healthcare, and affect the management and outcomes of diseases like #lupus

👨‍⚕️ In this insightful YouTube video, Dr. Daniel Guimarães de Oliveira discusses the crucial need for holistic care approaches that take into account a persons wider context, including these non-clinical factors. 

🎥 Watch the video now to learn more about these insights and the need for tailored healthcare strategies that address a person’s broader context.

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13 CommentsComment on Facebook

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4 days ago

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‼️Today is #WorldSjogrensDay, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.

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1 week ago

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🪫 Fatigue is one of the most common and challenging symptoms of lupus. Even in remission, this persistent issue can continue to affect the daily lives of those with lupus, highlighting the complex nature of this autoimmune disease and its symptoms.

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2 weeks ago

👨‍⚕️ Don't miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

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youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zm
... See MoreSee Less

👨‍⚕️ Dont miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

📈 The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

🔍 The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patient’s condition is comprehensively evaluated.

🎥 Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!

https://youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zmImage attachment
LUPUS EUROPE Uniting people with Lupus throughout Europe
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