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🦋 According to our "Living with Lupus in 2020" survey, UV sensitivity ranks among the most common and bothersome symptoms for those living with #lupus.
🔊 Join us! Share how this facet of #SLE limits your daily activities and the strategies you use to #KickLupus and UV light
✅ Very happy to report that we have completed the entiere STEP1 of #ENDORSED, the international #consensus definition of #SEVERE #LUPUS by the #DORIS group gathering 50+ potential facets of severity thanks to the international panel of HCPs (step 1a) and patients (step 1b) 👍
✅ Using #ChatGPT to generate a POST-#EULAR2025 summary about #Lupus ⬇️ how did I do that?!? I performed a search for 'lupus' in the online program of the congress🔎 copy-pasted the results in chatGPT and used it to perform a 'thematic analysis' on the results 💪👍 FASCINATING
🌟Thank you to all who attended our #EULAR2025 debrief webinar!
🙌 Especially to our presenters, volunteers & PAN members who shared their insights & experiences.
Stay tuned for more news and updates & don't forget to subscribe to our newsletter! https://www.lupus-europe.org/emails/
On #ChronicDiseaseDay, our #3TR patient representatives shared what keeps them going: their families, their friends, and the patient communities they’re part of. 💪❤️
👇 Tell us: who do you stay strong for?
#ChronicDiseaseDay #Lupus #MS #Asthma
⏰ Just 1 hour left for our #EULAR2025 highlights webinar!
😨 You haven't registered yet? Don't worry! We have🔝news for you!
✅ You can still catch all the insights live on our Facebook page https://f.mtr.cool/rfbzgadqse
Join us at 18h CET to explore 🗝️ takeaways from the Congress!
🔊Listen to the #eularPARE podcast, "Working with an RMD: Real Stories, Real Strategies".
🎙️Hear inspiring guests share practical tips for managing work life while living with an RMD.
Join here:
Spotify: https://pulse.ly/mo14plakig
Apple: https://pulse.ly/ceantfnfwd
#Rheumatology
🌟Our #EULAR2025 highlights webinar is tomorrow!
👨⚕️Some of the presenters will share the main takeaways from their talks.
🦋Also, some of our volunteers will share their insights from the Congress.
Don’t miss this opportunity!
Register now by ✉️ secretariat@lupus-europe.org
😨 Did you miss our #EULAR2025 debrief webinar?
😮💨 Don't worry! You can watch the full session at your convenience.
Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page!
www.facebook.com/LupusEurope/videos/1257813502412444
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‼️ According to our "Living with Lupus in 2020" survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus.
😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many.
💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples:
🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms.
The need to stay covered and protected from the sun can make these jobs particularly challenging.
🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus.
Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection.
This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment.
For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities.
🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun.
😊 Share your experiences and how you #KickLupus & UV light in your daily life
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🟣 Phase 2 of LUPUS-ALERT is now complete!
Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care.
🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management:
🔷 Associated conditions
🔷 Comorbidities
🔷 Social and economic context
🔷 Challenges and barriers — like language, access to medication, or distance to care
🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care.
💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process!
📌 Stay tuned — more to come soon!
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🌟Thank you to all who attended our #EULAR2025 debrief webinar!
🙌 Especially to our presenters, volunteers & PAN members who shared their insights & experiences.
Stay tuned for more news and updates & don't forget to subscribe to our newsletter! www.lupus-europe.org/emails/
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ABOUT LUPUS EUROPE
Who are we?
LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across Europe. We are a non profit independent organisation. 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. We use the WHO (World Health Organisation) definition of Europe as a region, rather than a political entity.
Since our humble beginnings, we have grown to represent most of Europe’s main countries which, in turn, represent over 30,000 patients in their respective memberships. We have observed the gradual shift in position, where formerly patients were often side-lined and not thought to be capable of contributing to their own care, to the current-day-thinking which aims for increasing patient involvement and communication at all levels.
LUPUS EUROPE is now considered a valued partner at medical conferences, in European healthcare organisations fighting for wider patients’ rights, and in Europe-wide initiatives aimed at improving healthcare and setting “standards of care” for lupus patients. We see research and clinical trials as key to the future of lupus patients and work with all stakeholders to improve the quality and efficiency of all lupus research.
LUPUS EUROPE, until 2020 was a UK based charity (803768). From 2021 LUPUS EUROPE moved and became a Belgium based non-profit organisation (0758.650.658).
OUR TEAM
Board of Directors & Secretariat
The LUPUS EUROPE board is composed of seven directors who are all either lupus patients themselves or relatives of a lupus patient. They all work on an entirely voluntary basis. Working alongside them the part-time secretariat ensures administrative support.
In addition to the usual directors, LUPUS EUROPE may call on co-opted advisors for specific projects. Again, all co-opted advisors are volunteers.
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Jeanette AndersenChair
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Annemarie SluijmersVice-Chair, Secretary
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Elfriede WijsmaVice-Chair, Treasurer
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Francesca MarchioriBoard Member
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Alain CornetSecretariat
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Zoe Karakikla-MitsakouProject Manager
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Sara BadrehPAN Coordinator
ETHICS & GOVERNANCE
From 2021 LUPUS EUROPE moved and became a Belgium based non-profit organisation. Our Articles of Association can be found here:
And our constitution can be found here: Constitution 2024
LUPUS EUROPE applies the EFPIA (European Federation of Pharmaceutical Industries and Associations) Code of Good Practice on relationships between the pharmaceutical industry and patients’ organisations. The same Code of Good Practice will be upheld in relation to any funding received from any other source.
With regards to decision making, we highly value our member’s contributions. Every year, our action plan for the next year is reviewed and discussed with our members as a key element of our general meeting. This is also the audience where we discuss significant “policy” matters, items impacting our vision or strategies. decisions at general assembly are made by Majority vote, as foreseen in our statutes.
During the year, the patient voice is gathered to orient our action in specific projects. this is done through our PAN (PAtient Advisory Network), or through on line consultations and surveys. With regards to decisions on the day to day running of the organistaion, decisions are made by majority vote of the board, as foreseen in our “trustee code of conduct”. Staff members attending board meetings, or board members with a conflict of interest, if any, do not vote on such decisions. If significant changes need to be made to our approved plans, the board consults members by email, social media dedicated network or calls or at the occasion of a webinar.
For more, please also read our code of conduct for volunteers or for the Board of Directors and our decision making policy.
The General Assembly is made up of the national delegates who represent their individual countries. The delegate is also very often the international person of contact for that country. The General Assembly meets once a year during the annual LUPUS EUROPE convention. The General Assembly is responsible for tasks such as:
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- nominating qualified people for election to director positions
- electing directors
- setting annual membership subscription rates for both full and associate member organisations
- deciding on amendments to the constitution, on dissolution or on removal of a director
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LUPUS EUROPE ‘s accounts are audited every year by an independent accountant. To read the independent accountant’s report, follow this link. To find our financial report, simply follow this link.
With the financial hardship faced by our members, we have decided to minimise membership fees and contributions, and not to seek funding from individuals or national organisations in members countries. As a result, in 2023, 93.5% of the funds raised by LUPUS EUROPE were provided by the pharmaceutical industry. To maintain its independence, Lupus Europe has fixed a ceiling of maximum 20% of its fund to come from one partner. In 2023, the highest contribution from a single company was reached by Hoffmann La Roche with a total of 10.6% of total funds raised.
OUR HISTORY
The story so far
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2021 Headquarters move to Brussels
As Brexit unfolded, we relocated to Brussels, close to many of our partner groups, to ensure an optimal support to all people living with lupus in Europe
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2017 An updated Strategic plan
The convention unanimously adopted LUPUS EUROPE’s revised Strategic plan, including the creation of Pan-European work groups and a Patient Advisory Network. The new structure will allow for more ambitious goals over the next 5 years.
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2015 Establishing a World Lupus Federation
Lupus Europe invited lupus groups from around the world to join its 2015 convention in Vienna, coinciding with the International Congress on lupus, so that a new World Lupus Federation could be created, uniting people with lupus from every continent.
GET INVOLVED
OUR SPONSORS
Our belief is that we need to work alongside pharma, healthcare professionals, academia and other stakeholders in order to achieve our vision. We cannot do this alone.
OUR MEMBERS
The members of LUPUS EUROPE are national and other properly-accredited Lupus Groups in Europe. At this moment 23 countries with 25 organisations representing about 40,000 patients are registered as Full members, and an extra 7 countries are associate members.
