LUPUS EUROPE

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LUPUS EUROPE

Uniting People with Lupus throughout Europe We are a non profit independent organisation.

LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across Europe. We aim to support and empower our national organisation members, sharing information with them and promoting better patient-centred processes, both within the healthcare field and at a political level. We also work tirelessly to improve access to healthcare for all lupus patients, advocating on their behalf at EU level. LUPUS EUROPE VISION:

A fulfilling life for all people with lupus in Europe until we have reached a world without lupus.

27/10/2025

🇧🇪 Spotlight on Lupus Belgium!

During our , 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 .

🌸 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.

24/10/2025

📢 Calling all 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 presents unique challenges that need to be addressed.

✍️ That is why we invite you to participate in the 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

22/10/2025

🌍 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 . 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/S1568997225001478

20/10/2025

🇨🇿 Spotlight on Revma Liga ČR!

✨ At our , our Czech member organisation impressed us with a detailed and inspiring poster showcasing their wide range of initiatives for people living with lupus. From psychological support to exercise, they cover it all!

🧠 Their psychological support programme continues to make a real difference, providing counselling for newly diagnosed patients and emotional support for those facing challenges.

🎨 Through the stunning “Faces of Lupus” photo exhibition, Revma Liga ČR brings the stories and emotions of people living with lupus to the public, humanising the condition and raising awareness in an artistic and empathetic way.

📦 Their Welcome Packs for newly diagnosed patients, the Health Literacy Academy, and their video “Pain in Systemic Lupus” (with over 1,000 views!) help patients better understand their disease, treatment, and self-management.

💪 The innovative Revma v klidu (Rheuma in Peace) online course combines physical activity, motivation and mental health support. 12 weeks, 150 exercises, and 12 motivational challenges designed by expert physiotherapists. A great resource to improve wellbeing at home! If any patient organisation is interested in this iiniciative, please get in touch with Revma Liga ČR and they'll be happy to share it!

🦋 Their Rheuma Counselling service continues to support patients with free psychological sessions, offering up to four consultations to help newly diagnosed patients, although it is also possible to apply even if the illness started in the past. 35 lupus patients supported in 2024!

🎥 Their new professional video “If you have systemic lupus, what are next steps?”, with over 1000 views, helps patients understand the next steps after diagnosis: follow-up, specialists involved, tests, and how to prepare for check-ups.

👏 A heartfelt thank you to Revma Liga ČR for their incredible dedication and constant innovation. And for their continuous support of and !

17/10/2025

✅ Great news!

🙌 New EULAR 2025 recommendations for the management of systemic Lupus erythematosus with kidney Involvement have just been published in Annals of the Rheumatic Diseases.

🌟 Including patients in research is essential to ensure that scientific recommendations like these truly reflect real needs, experiences, and priorities. That's why we are proud that our Chair, Jeanette Andersen, was part of the EULAR task force that developed them.

💁‍♀️ These updated recommendations provide evidence-based guidance for the management of lupus nephritis, including diagnosis, treatment targets, and therapies.

🚨 Remember! While recommendations offer general direction based on scientific evidence, it’s important to remember that 𝐞𝐚𝐜𝐡 𝐩𝐚𝐭𝐢𝐞𝐧𝐭 𝐢𝐬 𝐮𝐧𝐢𝐪𝐮𝐞. Treatment must always be 𝐭𝐚𝐢𝐥𝐨𝐫𝐞𝐝 𝐢𝐧𝐝𝐢𝐯𝐢𝐝𝐮𝐚𝐥𝐥𝐲. If you have lupus, talk to your rheumatologist or healthcare team about your preferences and what’s best for you.

Thank you to all authors for this amazing work!

https://ard.eular.org/article/S0003-4967(25)04412-7/fulltext

15/10/2025

Last week, Lupus Europe attended the Lupus Academy Meeting, one of the key global gatherings bringing together experts, researchers and patient representatives to share the latest updates in lupus.

Why do we take part in these meetings?
Because our presence there has several purposes:

1️⃣ 𝐒𝐭𝐚𝐲𝐢𝐧𝐠 𝐮𝐩 𝐭𝐨 𝐝𝐚𝐭𝐞, 𝐞𝐧𝐬𝐮𝐫𝐢𝐧𝐠 𝐭𝐡𝐞 𝐢𝐧𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐨𝐧 𝐠𝐨𝐞𝐬 𝐫𝐞𝐚𝐜𝐡𝐞𝐬 𝐭𝐡𝐞 𝐥𝐮𝐩𝐮𝐬 𝐜𝐨𝐦𝐦𝐮𝐧𝐢𝐭𝐲
We attend to stay informed about the most recent advances in lupus research and management. This allows us to keep contributing real value to research projects and to share trustworthy, science-based information with our member organisations, ensuring that the entire lupus community benefits from it.

2️⃣ 𝐁𝐮𝐢𝐥𝐝𝐢𝐧𝐠 𝐚𝐧𝐝 𝐚𝐝𝐯𝐚𝐧𝐜𝐢𝐧𝐠 𝐩𝐫𝐨𝐣𝐞𝐜𝐭𝐬
These meetings are where collaborations happen. We meet in person with researchers and partners to work on ongoing studies and to design new initiatives that address the unmet needs of people with lupus.
Our proposals are grounded in data collected through our own research such as the Living with Lupus Survey 2020 and the Swiss Knife Survey 2024, which capture the voices, experiences and priorities of patients across Europe.

3️⃣ 𝐒𝐭𝐫𝐞𝐧𝐠𝐭𝐡𝐞𝐧𝐢𝐧𝐠 𝐜𝐨𝐥𝐥𝐚𝐛𝐨𝐫𝐚𝐭𝐢𝐨𝐧 𝐰𝐢𝐭𝐡 𝐭𝐡𝐞 𝐬𝐜𝐢𝐞𝐧𝐭𝐢𝐟𝐢𝐜 𝐜𝐨𝐦𝐦𝐮𝐧𝐢𝐭𝐲
Over the years, these connections have enabled us to join scientific committees and ensure that major medical congresses include sessions where the patient voice is heard and valued as an essential part of lupus care and research.

None of this would be possible without the support, commitment and trust of our member organisations across Europe. 💜

Together, we work to ensure that the patient voice is not only present but relevant, informed and impactful.

14/10/2025

🚨 Due to exceptional circumstances, 2 spots have become available at our Patient Panel for men!

If you’re a man living with lupus in Europe, don’t miss this chance to join other men in this unique initiative!

✈️ Reasonable travel expenses & accommodation covered.

📩 To join, just email secretariat@lupus-europe.org and let us know you’d like to take part! 😃

13/10/2025

💜 Spotlight on Σύνδεσμος Ρευματοπαθών Κύπρου ΣύΡεΚ, our member organisation from Cyprus!

At our , Andri Spanou Nicolaou from CYLPER presented a beautiful and deeply meaningful project, consisting of two workshops, very much related to this year's theme: Every Voice Matters.

1️⃣ “My Voice Has Space”: a workshop designed to create a safe and supportive environment where people living with lupus can share their experiences freely, without fear or judgment.

2️⃣ “My Voice Becomes Action”, where the voices that were shared in the latter workshop turn into creation, action and connection. The experience doesn't remain in sharing- it becomes mobilisation.

👏 Bravo to Andri and CYLPER for this inspiring initiative, proving once again that Every Voice Matters!

10/10/2025

🚨 Today is .

☝️ Do you know that patients are at high risk of anxiety and ?

‼️ Some of the main signs of depression are:

- Feelings of guilt, worthlessness, and helplessness.
- Pessimism and hopelessness.
- Insomnia, early-morning wakefulness, or sleeping too much.
- Crankiness or irritability.
- Restlessness.
- Loss of interest in things once pleasurable, including s*x.
- Overeating or appetite loss.

🙏 Always talk to your physician about how you feel. Addressing mental health problems promptly is important.

🦋 Do you want to know more? Visit and get reliable answers to all your questions about lupus in most European languages.

😵‍💫 For those overwhelmed by the medical jargon, try !

https://lupusgpt.org/

https://easy.lupusgpt.org/

09/10/2025

📍 We’re in Barcelona for the 6th Meeting!

This important project is one of the largest collaborative research initiatives in Europe, funded by the Innovative Medicines Initiative (IMI), and aims to understand why patients respond differently to treatments.

😄 At Lupus Europe, we’re proud to have four patient representatives in the 3TR Patient Advisory Committee, making sure that the voices and experiences of people living with these diseases are always included.

🦋 Thanks, Blanca and Francesca, Annemarie and Susan, for your hard work!

08/10/2025

🦋 There are no two lupus patients alike.

‼️ Each person’s lupus is unique because the disease itself is highly heterogeneous, meaning it can affect different organs, appear with different symptoms, and vary greatly in severity and evolution.

➡️ But it’s not only the medical side that explains these differences.

🔴 Where you live, your income, your access to doctors, or even how well you understand medical information, can significantly affect how lupus is diagnosed, treated, and managed.

💡 Did you know that...

1️⃣ People living in rural areas often face delays in diagnosis because of limited access to specialists
2️⃣ Low income or transport issues can reduce access to medication and follow-up care
3️⃣ Low health literacy can make treatment plans harder to follow
4️⃣ Gender and cultural expectations can intensify stigma and emotional strain

These aren’t medical causes. But unless we address them, lupus care will never be truly holistic nor complete.

🤔 Which social determinants of health (SDH) most affect lupus patients? What can be done to reduce their impact and ensure that everyone, regardless of background, receives the care they need?

📚 To help answer these questions, we have analysed all the studies published over the past 10 years on how SDH influence the lives of people with lupus.

🌟 The study, led by Dr. Daniel Guimarães de Oliveira & Zoe Karakikla-Mitsakou (patient and General Secretary of Lupus Europe), with the support of Prof. Laurent Arnaud and Lena Koskina, identifies the key factors that can shape diagnosis, treatment, and long-term outcomes, and proposes concrete solutions at every step of the patient pathway.

💁‍♀️ You can read the study, published in Autoimmunity Reviews, here: https://t.co/OXq9YGUddD

🔔 Don't forget to follow the campaign to know more about this and other of our studies!

07/10/2025

💜 What a fantastic last day at our 2025!

☀️ Following our theme "Every Voice Matters", we began the morning with updates on how Lupus Europe, together with other organisations like ERN RECONNET, is working towards better lupus care and a deeper understanding of the economic impact of lupus.

🩺 Prof. Giuseppe Turchetti, from ERN RECONNET, shared insights from our joint work on developing a more structured and patient-centred approach to lupus care and on the economic burden of lupus.

He highlighted that economic evaluation should include direct, indirect and intangible costs, as factors like diagnosis delay, organ damage, age, disease activity, flares and socioeconomic status can significantly impact the overall cost of lupus.

💬 Our Organisation Coach, Alain Cornet, closed the sessions with a practical workshop on communication, showing how message tracks help us stay focused, collaborate effectively and make our messages truly impactful.

🌳 And do you remember our beautiful tree full of leaves?

What if we turned each of those leaves into learnings and created synergies? That’s exactly what we did! 😃 Our Chair, Jeanette Andersen, identified some of those projects and added butterflies to symbolise the new connections and collaborations that will benefit us all in the future.

😃 Lastly, she wrapped up the Convention with a recap of key learnings and next steps for the year ahead.

😍 What a wonderful we had!

💜 A big thank you to Prof. Giuseppe Turchetti for joining us on the last day of the Lupus Europe Convention. Your dedication and commitment are truly appreciated!

🙏 A heartfelt thank you to our Dutch member organisation, NVLE, for their warm hospitality here in Amsterdam, and to all our amazing delegates who joined us from across Europe. Your energy, ideas and passion made this event unforgettable.

👋🏻 See you in 2026 in Barcelona (Spain), where our friends from Felupus will welcome us with open arms!

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Website

http://lupus-europe.org/

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