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🤩What an amazing #EULAR2025 Congress!!
🔝Congratulations to @eular_org & the whole team for the outstanding organisation and speaker line-up!
Happy with our performance and extra proud this year— #LupusGPT won the #MadeWithPatients Award 2025!
See you in London at #EULAR2026!
We are so #proud at @LupusEurope for being featured in the closing plenary. Thanks #eular2025 for highlighting this amazing tool.
#lupusgpt
Find out more at. https://lupusgpt.org/
#Lupus is one of the biggest social discriminators
🔺️Higher prevalence in Women
🔺️Higher prevalence in Non-Whites
🔺️More catastrophic manifestations in low socioeconomic groups
Disaster Medicine Session
Social disparities and impact on outcomes
#EULAR2025
@RheumNow
Thank you to @SEReumatologia for highlighting #LupusGPT!
#EULAR2025
@DrGomezPuerta @Reumaclinic @AlvaroGraciaSER @ReumaVHebron @GVADrPeset @Inmusc1 @reumahulp @RaquelAlmodovaG @ReumaValdecilla @MPaulinoreuma @Maitesidi @reumacastro @ligareuma @RusinovichOlga @ReumaPdeHierro En #EULAR2025, de la mano de @TuLupus conocemos la iniciativa de @LupusEurope: #LupusGPT. Las asociaciones interesadas en hacer un proyecto similar para otras patologías, ¡atentas al final del vídeo porque están dispuestas a ayudaros!
#Equality vs. #Equity
Some people may need more than others
Disaster Medicine Session
Social disparities and impact on outcomes
#EULAR2025
@RheumNow
😃 #LupusGPT has been highlighted once again at @eular_org PARE Highlights session, recognising its value as a patient-driven, multilingual tool that makes reliable lupus info accessible worldwide.
A great example of how co-creation with patients leads to🔝innovation!
#EULAR2025
Research & health projects must be based on true co-creation, engaging trained patient partners in all stages of research.
Our Patient Advisory Network (PAN) ensures that patient voices actively shape research to deliver meaningful & patient-relevant outcomes
#EULAR2025
Digital health has evolved a lot, but there’s still a lot we can improve.
That’s where tools like #LupusGPT and #EasyLupus can make a change!
Great and dynamic talk by Dr Rafael Prieto Moreno, from @openreuma!
#EULAR2025
🏆 We’re thrilled to announce that #LupusGPT has won the PFMD #MadeWithPatients Award 2025 as Best Emerging Innovation!
🌍A huge moment for Lupus Europe & the European #lupus community — proving what’s possible through true patient innovation and collaboration.
😃Celebrating at #EULAR2025!
#PEOF2025
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🏆 This Wednesday, we will find out if LupusGPT will win the PFMD Made with Patients Award 2025!
🎉 Join us in this exciting moment for the lupus community by watching the ceremony live online (registration is available at the link provided in our blog post).
👉 If you still don’t know what this huge achievement means, read our latest blog post, where you will also find the link to register for the live ceremony at the Patient Engagement Open Forum (PEOF).
💜 Created by patients, for patients, #LupusGPT and #EASYLupus are already breaking barriers in access to reliable, multilingual lupus information. Check the tool out and explore how easy it is to access valid and clear lupus information in your language.
Remember! All the information and links are available in our latest blog post!
www.lupus-europe.org/lupusgpt-made-with-patients-awards-2025/
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🟣 LUPUS-ALERT is moving forward!
Thanks to the amazing collaboration between healthcare professionals and patients, we’ve now identified many potential vulnerabilities that can impact access to appropriate lupus care.
We want to extend a special thank you to all the lupus patients who responded to our call and shared the barriers patients may face: financial, social, linguistic, geographic…
🌟 Your contribution is helping to develop a tool that will systematically identify the vulnerabilities patients face. This is a wonderful step towards lupus care that is more holistic, equitable, personalised, and responsive to patients' real-life needs.
🔝 A huge thank you to Prof. Laurent Arnaud, Dr. Daniel Guimarães de Oliveira - Imunologia Clínica, Jeanette Andersen, and Zoe Karakikla-Mitsakou for their invaluable contributions and commitment to LUPUS-ALERT!
🌍 And a special thank you to the many physicians and patients who have come together to work on this project for the benefit of lupus patients.
🚀 #LupusAlert now moves into Step 2!!!
🔔 Stay tuned!
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#EULAR2025 is around the corner!
🦋 Lupus Europe plays a significant role in this year's Congress, with a diverse range of exciting topics and great participation.
✅ We will be sharing insights from most of the lupus sessions on X, so don't forget to follow us!
😃 Stay tuned!
1 CommentsComment on Facebook
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.
