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🚨 𝗟𝗮𝘀𝘁 𝗰𝗵𝗮𝗻𝗰𝗲❗
🙏 Help Prof @Lupusreference and his team validate the Lupus Brain Fog Severity Scale.
✅ Make lupus brain fog measurable.
⏱️ 5 minutes of your time can make a huge impact!
https://lupusresearch.limequery.org/337533?lang=en
✅ #COGNILUP is based on a series of 12 tests, assessing various aspects of #cognition relevant to the specific context of #Lupus and tailored to detect minor alterations. A series of 12 challenges to unlock the secret of the 12 golden butterflies, to improve QoL in #SLE 🦋
🚨Alcohol, recreational drugs & lupus: what are the risks?
Young people face real-life decisions that can affect their health. This Youth Group webinar offers clear, evidence-based information to help support safer, informed decisions.
Email secretariat@lupus-europe.org to join
✅ Because #neuropsychological testing is difficult to get almost everywhere in the world ⬇️ I'm developing #COGNILUP, a free online platform with multi-lingual capabilities, enabling sensitive cognition testing of #lupus patients everywhere in the world 🌏🌎🌍
✅ One more week before the end of the validation phase of the #LBFSS #brainfog score for #Lupus. If you have #SLE and have not participated yet we definitely need your help ⬇️ 15 minutes only to help us improve the recognition of #cognitive manifestations 🧠
🇨🇭 Spotlight on Lupus Switzerland!
At our #LupusConvention, Lupus Switzerland showcased their latest magazine dedicated to men living with lupus.
👏 With 600+ copies printed, this initiative helps challenge assumptions and ensure every voice is represented.
Congratulations!
✅ After MANY HOURS of work on my freetime, I am happy to share that #COGNILUP, the online free platform to test #cognition in #Lupus is going in the right direction 👍 More about it at @SLEUROSOCIETY meeting in Lisbon!
Pre-registrations for the 8th SLEuro Advanced Workshop on SLE are already open!
📍 Stockholm, Sweden 🇸🇪
🗓️ 8-9 May 2026
⏰ Deadline: 8th March 2026
Pre-register here: https://services.aimgroup.eu/ASPClient/home2.asp?eventoid=5512&TypeIN=N
Discover the Preliminary Programme and more: https://sleuro.org/advanced-workshop-on-sle/
🚨 𝗟𝗮𝘀𝘁 𝗰𝗵𝗮𝗻𝗰𝗲❗
🙏 Help Prof Laurent Arnaud and his team validate the Lupus Brain Fog Severity Scale.
✅ Make lupus brain fog measurable.
⏱️ 5 minutes of your time can make a huge impact!
lupusresearch.limequery.org/337533?lang=en
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Don't miss this unique opportunity! Register now by emailing secretariat@lupus-europe.org
📌 Youth Group Webinar: Alcohol, recreational drugs & lupus: what are the risks?
🌟 What young people living with lupus need to know to protect their health.
Lupus Europe’s Youth Group invites you to an open, evidence-based discussion with Dr Luca Moroni focused on how alcohol and recreational substances can interact with lupus, treatments, and long-term health.
We will talk clearly about:
🚨 Known risks and current uncertainties
🚨 Interactions with lupus treatments
🚨 Real-life situations often left out of the conversation
😱 Why talk about this?
Because young people sometimes make choices that can carry real health risks, and they don’t always feel able to tell their loved ones or doctors everything.
‼️ Alcohol and recreational substances are part of many social environments. When lupus is involved, lack of reliable information can increase risks.
💁♀️ Talking about this before helps:
• Reduce avoidable risks.
• Encourage safe and informed decisions.
• Create a safe space for questions that are often left unasked.
🌈 That’s why this webinar exists: to anticipate real situations, NOT encourage them, and provide clear, evidence-based information for young people living with lupus.
🗓 29 January 2026
⏰ 19:00 CET
💻 Online
⏳ There’s still time to join!
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🇨🇭 Spotlight on Lupus Switzerland!
At our #lupusconvention, Lupus Switzerland presented a powerful poster showing the cover of their latest magazine, highlighting their commitment to diversity and inclusion within the lupus community.
🧑🤝🧑 Although around 9% of their members are men, this was the first time in more than ten years and 22 issues that the topic had been addressed. A meaningful step towards ensuring everyone feels seen and represented.
🖨️ With more than 600 copies printed and distributed, this initiative helps raise awareness, challenge assumptions and promote inclusion across their community.
👏 Congratulations to Lupus Switzerland!
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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 up to 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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Ricky ChotaiBoard 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 2024, 92.3% 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 2024, 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.
