Stepping Up for Skin Lupus: An ePAG in ERN Skin

Name badge reading Annemarie SLUIJMERS from Lupus Europe at the European Reference Networks SKIN eventLupus Europe is proud to announce a significant milestone in the representation of people with skin lupus. Annemarie Sluijmers, Vice Chair and Secretary of Lupus Europe has taken an important step by becoming an ePAG (European Patient Advocacy Group) Patient Advocate of ERN Skin.Annemarie became an ePAG in July 2023. Her recent attendance at the ERN Skin Board Meeting in Paris on November 6, 2023, marks an important advancement for the lupus community.

 

ERN Skin, a dedicated network addressing complex skin disorders, had its board meeting to discuss the future direction of the structure of the network and its thematic groups, and as such the patient advocacy within ERN Skin. For the first time, the voice of people with skin lupus was thoroughly represented at ERN Skin. This representation is a vital step forward in ensuring that the specific challenges and needs of those affected by skin lupus and lupus with skin manifestations are heard and recognised.

 

AIBD/TOXITEN: A New Focus for Skin Lupus

 

During the meeting, a structural evolution of thematic groups was proposed. The groups have now been streamlined into four main categories:

 

Genodermatoses-1

Genodermatoses-2

AIBD/TOXITEN

ALLOCATE

 

Skin lupus will fall under the AIBD/TOXITEN group. The AIBD/TOXITEN group is a subset focusing on auto-immune and toxic epidermal diseases. This classification underscores the significance of lupus as an autoimmune condition with dermatological manifestations, ensuring that it receives the appropriate focus and resources.

Building a Strong Community in ERN Skin

 

As a newcomer to ERN Skin, Annemarie is swiftly becoming acquainted with the network’s intricacies, its organisational structure, and its ambitious work. A key priority is identifying a lupus dermatologist. A lupus dermatologist will represent together with Annemarie the lupus community in this new thematic AIBD/TOXITEN group.

 

The collaboration and support within the ERN Skin community have been exceptional. Fellow ePAGs are providing Annemarie with invaluable support as she navigates this new role.

 

For more updates, stay tuned to our blog and upcoming newsletters. Go here to find out more about work on Lupus and the Skin.

 

 

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Zoe Karakikla-Mitsakou

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    LUPUS EUROPE
    5 days ago
    LUPUS EUROPE

    🇮🇸 Spotlight on Lupus Iceland!

    At our #LupusConvention, Lupus Iceland presented an inspiring poster showing why patient organisations are essential: they identify unmet needs and work towards practical solutions.

    Did you know they import sun protection products, like hats & sunscreen, that are not sold in Iceland? How amazing is that? 😍

    📰 Through articles in newspapers and radio interviews, they help raise public awareness about lupus and its challenges, giving visibility to the voices of patients in Iceland.

    💬 They also hold monthly meetings to answer questions, share updates, and build a strong support network.

    💜 And they’re working to translate #Lupus100 into Icelandic! Making reliable information about lupus accessible to even more people across Europe.

    👏 Thank you, Lupus Iceland, for your dedication and hard work. A perfect example of how important patient organisations are, and how much patients can achieve when they work together!     ... See MoreSee Less

    🇮🇸 Spotlight on Lupus Iceland! At our #LupusConvention, Lupus Iceland presented an inspiring poster showing why patient organisations are essential: they identify unmet needs and work towards practical solutions. Did you know they import sun protection products, like hats & sunscreen, that are not sold in Iceland? How amazing is that? 😍 📰 Through articles in newspapers and radio interviews, they help raise public awareness about lupus and its challenges, giving visibility to the voices of patients in Iceland. 💬 They also hold monthly meetings to answer questions, share updates, and build a strong support network. 💜 And they’re working to translate #Lupus100 into Icelandic! Making reliable information about lupus accessible to even more people across Europe. 👏 Thank you, Lupus Iceland, for your dedication and hard work. A perfect example of how important patient organisations are, and how much patients can achieve when they work together!
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    LUPUS EUROPE
    2 weeks ago
    LUPUS EUROPE

    🇧🇪 Spotlight on Lupus Belgium!

    During our #LupusConvention, several member associations presented their posters, showing the incredible work being done across Europe to support people living with lupus.

    🔝 The ASBL Lupus Erythematosus Association presented their inspiring activities, all focused on informing, connecting and empowering people living with lupus across the country.

    🖥️ In May, they proudly launched their new website, www.lupus.be, offering visitors reliable information and an easier way to stay connected with their community.

    Did you know that our Capacity Programme supported this initiative? If you are a member of Lupus Europe and have a project that requires assistance, please send us an email and we'll be glad to help.

    🧘‍♀️ Through their Yoga Workshop, they create a safe space, helping members find wellbeing- an initiative they will continue in the coming year.

    📖 Their magazine, Le Lien, published two new editions this year, sharing the latest scientific advances, patient stories and perspectives on lupus, continuing to bridge knowledge and experience.

    🎓 They also support therapeutic workshops, empowering both patients and caregivers through training designed to improve understanding and self-management of #lupus.

    🌸 With a growing community of more than 3,000 followers on Facebook, Association Lupus erythémateux Belgique continues to build a safe space where people can stay informed, supported and connected.

    📅 And on October 18th, they’ll host their Annual Day! That will focus on troublesome symptoms and new treatments- don't miss out!

    💜 Congratulations to The ASBL Lupus Erythematosus Association for their ongoing commitment and creativity. You are a wonderful example of how local initiatives can make a real difference for those living with lupus.     ... See MoreSee Less

    🇧🇪 Spotlight on Lupus Belgium! During our #LupusConvention, several member associations presented their posters, showing the incredible work being done across Europe to support people living with lupus. 🔝 The ASBL Lupus Erythematosus Association presented their inspiring activities, all focused on informing, connecting and empowering people living with lupus across the country. 🖥️ In May, they proudly launched their new website, www.lupus.be, offering visitors reliable information and an easier way to stay connected with their community. Did you know that our Capacity Programme supported this initiative? If you are a member of Lupus Europe and have a project that requires assistance, please send us an email and well be glad to help. 🧘‍♀️ Through their Yoga Workshop, they create a safe space, helping members find wellbeing- an initiative they will continue in the coming year. 📖 Their magazine, Le Lien, published two new editions this year, sharing the latest scientific advances, patient stories and perspectives on lupus, continuing to bridge knowledge and experience. 🎓 They also support therapeutic workshops, empowering both patients and caregivers through training designed to improve understanding and self-management of #lupus. 🌸 With a growing community of more than 3,000 followers on Facebook, Association Lupus erythémateux Belgique continues to build a safe space where people can stay informed, supported and connected. 📅 And on October 18th, they’ll host their Annual Day! That will focus on troublesome symptoms and new treatments- dont miss out! 💜 Congratulations to The ASBL Lupus Erythematosus Association for their ongoing commitment and creativity. You are a wonderful example of how local initiatives can make a real difference for those living with lupus.Image attachmentImage attachment+3Image attachment
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    LUPUS EUROPE
    2 weeks ago
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    📢 Calling all #lupus patients!

    🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with #SLE presents unique challenges that need to be addressed.

    ✍️ That is why we invite you to participate in the #RareBarometer survey by EURORDIS-Rare Diseases Europe.

    Your insights can make a difference and help shape future policies that support people living with this condition.

    🙏 Thanks for sharing your experience!

    🔗 www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm     ... See MoreSee Less

    📢 Calling all #lupus patients! 🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with #SLE presents unique challenges that need to be addressed. ✍️ That is why we invite you to participate in the #RareBarometer survey by EURORDIS-Rare Diseases Europe. Your insights can make a difference and help shape future policies that support people living with this condition. 🙏 Thanks for sharing your experience! 🔗 https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
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    LUPUS EUROPE
    3 weeks ago
    LUPUS EUROPE

    🌍 According to the World Health Organisation (WHO), the substantial impact of social determinants of health (SDH) accounts for up to 55% of health outcomes.

    🚨 This means factors such as income, education, housing, access to healthcare, and social support can influence our health as much as medical treatments or disease management do.

    🤔 How is this possible? These factors don't cause lupus, but they strongly influence how early it’s diagnosed, how it’s managed, and what outcomes people experience.

    💸 For instance, low income may not only impair treatment adherence and disease management but also can potentially worsen long-term prognosis. Irregular treatment and delays in receiving care can lead to greater disease complications and a more difficult disease course over time.

    According to our latest review, co-led by Dr Daniel Guimarães de Oliveira and Zoe Karakikla-Mitsakou, people living with lupus often face disparities linked to SDH at every step of their journey, from diagnosis to management and outcomes. For example:

    🔹 Those with lower income or education, or from minority backgrounds, often face delayed diagnosis.
    🔹 Low health literacy and cultural stigma make treatment adherence harder.
    🔹 Living in rural areas limits access to specialised care.
    🔹 Financial barriers and social isolation worsen both physical and mental health.

    These are just a few examples of the many social determinants of health (SDH) that can influence #lupus. You can find the full picture in our study, which you can find at the end of this post.

    ‼️ All these factors interact, leading to worse outcomes like higher disease activity, reduced quality of life, and more comorbidities, as shown in Table 1 of our paper (see images).

    👉 Understanding and addressing these social factors is key to bringing a better life for people with lupus, until we reach a life without lupus.

    Read the full study: www.sciencedirect.com/science/article/pii/S1568997225001478     ... See MoreSee Less

    🌍 According to the World Health Organisation (WHO), the substantial impact of social determinants of health (SDH) accounts for up to 55% of health outcomes. 🚨 This means factors such as income, education, housing, access to healthcare, and social support can influence our health as much as medical treatments or disease management do. 🤔 How is this possible? These factors dont cause lupus, but they strongly influence how early it’s diagnosed, how it’s managed, and what outcomes people experience. 💸 For instance, low income may not only impair treatment adherence and disease management but also can potentially worsen long-term prognosis. Irregular treatment and delays in receiving care can lead to greater disease complications and a more difficult disease course over time. According to our latest review, co-led by Dr Daniel Guimarães de Oliveira and Zoe Karakikla-Mitsakou, people living with lupus often face disparities linked to SDH at every step of their journey, from diagnosis to management and outcomes. For example: 🔹 Those with lower income or education, or from minority backgrounds, often face delayed diagnosis. 🔹 Low health literacy and cultural stigma make treatment adherence harder. 🔹 Living in rural areas limits access to specialised care. 🔹 Financial barriers and social isolation worsen both physical and mental health. These are just a few examples of the many social determinants of health (SDH) that can influence #lupus. You can find the full picture in our study, which you can find at the end of this post. ‼️ All these factors interact, leading to worse outcomes like higher disease activity, reduced quality of life, and more comorbidities, as shown in Table 1 of our paper (see images). 👉 Understanding and addressing these social factors is key to bringing a better life for people with lupus, until we reach a life without lupus. Read the full study: https://www.sciencedirect.com/science/article/pii/S1568997225001478Image attachmentImage attachment+6Image attachment
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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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