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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‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; it's an illness that can influence every part of your life.

⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.

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‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; its an illness that can influence every part of your life.

⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.

✅ That is one of the reasons why you have to complete the Living with Lupus in 2024 survey: to understand the real-world impact of lupus to be able to advocate for better support, care, and treatment options.

🌟 Your insights are invaluable in shaping effective interventions and enhancing support systems for everyone affected by this complex condition in Europe.

🙏 Dont miss this unique opportunity to advocate for change and push for advancements in how lupus is managed and treated, ensuring that every individual receives the care they deserve.

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🌈 However, we at Lupus Europe believe that there is something very important that we also need to show the world: our vitality, our energy, and our will to enjoy life – including our work.

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