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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2 days ago

🫂This month, #KickLupus focuses on the power of support. Because whether you’re navigating lupus yourself or supporting someone who is, one thing is clear: no one should face it alone.

🦋 #Lupus is a lifelong condition that can potentially impact any tissue or organ in the body, affecting many aspects of life.

‼️It can also affect our mental health!

🌈 That’s why finding support is so crucial—it can transform how we cope with lupus, manage this autoimmune condition and thrive in life.

Check out the one in your country on our website and get in touch! www.lupus-europe.org/lupus-members/
... See MoreSee Less

🫂This month, #KickLupus focuses on the power of support. Because whether you’re navigating lupus yourself or supporting someone who is, one thing is clear: no one should face it alone.

🦋 #Lupus is a lifelong condition that can potentially impact any tissue or organ in the body, affecting many aspects of life.

‼️It can also affect our mental health!

🌈 That’s why finding support is so crucial—it can transform how we cope with lupus, manage this autoimmune condition and thrive in life.

Check out the one in your country on our website and get in touch! https://www.lupus-europe.org/lupus-members/Image attachmentImage attachment+3Image attachment

1 CommentComment on Facebook

I"m from Portugal 💜 Don't have much suport😢

4 days ago

The Lupus Europe Youth Group Webinar on SEX and #lupus is just around the corner!

🗓 May 3rd | 19h CET
🎙 With Dr Cristiana Sieiro Santos
Don’t miss this chance to talk openly about this topic in a safe and informative space!
📩 Register now:
secretariat@lupus-europe.org
... See MoreSee Less

1 week ago

🚨 Today is #wordday2025! which stands for WOrld Young Rheumatic Disease Day.

🌍 Through this global event, we can spread the word that children and young people get rheumatic diseases like lupus, too.

‼️ It is estimated that around 15-20% of #lupus patients are children, although it is rare that a child develops lupus before 5 years of age.

As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control.

🔴 On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids.

😰 The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information.

👉 Remember: it is impossible to learn everything about #lupus overnight! Your child's doctor is the best source of information.

Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management.

📷 Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness.

🐺 Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job!

Turn to your lupus association for support.

🤗 There are many organisations across Europe that can help you and your child cope with the disease.

More information on #sle in children at #Lupus100: f.mtr.cool/gfhbfdafvv

For more information on WORD Day, you can visit World Young Rheumatic Diseases Day - WORD Day
... See MoreSee Less

🚨 Today is #WORDDAY2025! which stands for WOrld Young Rheumatic Disease Day.

🌍 Through this global event, we can spread the word that children and young people get rheumatic diseases like lupus, too.

‼️ It is estimated that around 15-20% of #lupus patients are children, although it is rare that a child develops lupus before 5 years of age.

As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control.

🔴 On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids.

😰 The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information.

👉 Remember: it is impossible to learn everything about #lupus overnight! Your childs doctor is the best source of information.

Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management.

📷 Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness.

🐺 Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job!

Turn to your lupus association for support.

🤗 There are many organisations across Europe that can help you and your child cope with the disease.

More information on #SLE in children at #Lupus100: https://f.mtr.cool/gfhbfdafvv

For more information on WORD Day,  you can visit World Young Rheumatic Diseases Day - WORD DayImage attachmentImage attachment+6Image attachment

2 CommentsComment on Facebook

Herbalist SIMEON 𝐦𝐞𝐝𝐢𝐜𝐢𝐧𝐞 𝐩𝐫𝐞𝐯𝐞𝐧𝐭 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐇𝐞𝐫𝐩𝐞𝐬, 𝐥𝐮𝐩𝐮𝐬, 𝐀𝐋𝐒, 𝐓𝐢𝐧𝐞𝐚 𝐕𝐞𝐫𝐬𝐢𝐜o𝐥𝐨𝐫, 𝐂𝐊𝐃,, autism, fibromyalgia, kidney stones 𝐃𝐢𝐚𝐛𝐞𝐭𝐢𝐜𝐬. 𝐀𝐫𝐭𝐡𝐫𝐢𝐭𝐢𝐬 𝐌𝐒, 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞, 𝐬𝐚𝐲 𝐧𝐨 𝐭𝐨 𝐚𝐧𝐲𝐭𝐡𝐢𝐧𝐠 𝐫𝐞𝐥𝐚𝐭𝐢𝐧𝐠 𝐭𝐨 𝐯𝐢𝐫𝐮𝐬 & 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬, 𝐜𝐨𝐥𝐝 𝐬𝐨𝐫𝐞 𝐨𝐫 𝐭𝐡𝐲𝐫𝐨𝐢𝐝 𝐂𝐚𝐧𝐜𝐞𝐫, 𝐜𝐨𝐧𝐭𝐚𝐜𝐭 𝐡𝐢𝐦 𝐭𝐨𝐝𝐚𝐲 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐲𝐨𝐮𝐫𝐬𝐞𝐥𝐟 𝐟𝐫𝐨𝐦 𝐃𝐢𝐚𝐛𝐞𝐭𝐞𝐬, 𝐇𝐈𝐕, 𝐏𝐢𝐥𝐞 Brain tumor 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞✨ FB page below👇👇👇 www.facebook.com/doctorsimon1

𝐃octor Droigiangbe u* 𝐦𝐞𝐝𝐢𝐜𝐢𝐧𝐞 𝐩𝐫𝐞𝐯𝐞𝐧𝐭 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐇𝐞𝐫𝐩𝐞𝐬, 𝐥𝐮𝐩𝐮𝐬, 𝐀𝐋𝐒, 𝐓𝐢𝐧𝐞𝐚 𝐕𝐞𝐫𝐬𝐢𝐜𝐨𝐥𝐨𝐫, 𝐂𝐊𝐃,, autism, fibromyalgia, kidney stones 𝐃𝐢𝐚𝐛𝐞𝐭𝐢𝐜𝐬. 𝐀𝐫𝐭𝐡𝐫𝐢𝐭𝐢𝐬 𝐌𝐒, 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞, 𝐬𝐚𝐲 𝐧𝐨 𝐭𝐨 𝐚𝐧𝐲𝐭𝐡𝐢𝐧𝐠 𝐫𝐞𝐥𝐚𝐭𝐢𝐧𝐠 𝐭𝐨 𝐯𝐢𝐫𝐮𝐬 & 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬, 𝐜𝐨𝐥𝐝 𝐬𝐨𝐫𝐞 𝐨𝐫 𝐭𝐡𝐲𝐫𝐨𝐢𝐝 𝐂𝐚𝐧𝐜𝐞𝐫, 𝐜𝐨𝐧𝐭𝐚𝐜𝐭 𝐡𝐢𝐦 𝐭𝐨𝐝𝐚𝐲 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐲𝐨𝐮𝐫𝐬𝐞𝐥𝐟 𝐟𝐫𝐨𝐦 𝐃𝐢𝐚𝐛𝐞𝐭𝐞𝐬, 𝐇𝐈𝐕, 𝐏𝐢𝐥𝐞 Brain tumor 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞✨ FB page below👇👇 www.facebook.com/Droigiangbe-114637101534059/

2 weeks ago

🔴 Tomorrow is #WORDDAY2025!

🦋 And we will be sharing tips and information on how #lupus can affect children.

Help us raise awareness, which is key for an early diagnosis & a quick referral to a specialised paediatric rheumatologist.

Share our posts and follow the World Young Rheumatic Diseases Day - WORD Day campaign.

More information on lupus in children at #Lupus100 (multiple languages):

f.mtr.cool/qrvtyjqmpf
... See MoreSee Less

🔴 Tomorrow is #WORDDAY2025!

🦋 And we will be sharing tips and information on how #lupus can affect children.

Help us raise awareness, which is key for an early diagnosis & a quick referral to a specialised paediatric rheumatologist.

Share our posts and follow the World Young Rheumatic Diseases Day - WORD Day campaign.

More information on lupus in children at #Lupus100 (multiple languages):

https://f.mtr.cool/qrvtyjqmpf
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