Latest blogs

A celebratory image featuring gold confetti falling against a black background, symbolising achievement and recognition.
LupusGPT Named Finalist for the 2025 Made With Patients Awards: A Milestone in Patient-Driven Innovation
June 2, 2025
Charles Bridge in Prague at sunset with historic towers and colourful buildings under a dramatic sky.
National Member News – Hello from the Czech Republic
October 29, 2024
Lupus patient holding a medal for the 5km Run Limassol 2024 race.
My Dream to Run– A lupus Patient’s Dream Come True!
May 20, 2024
Join the Conversation: Lupus Europe’s Youth Webinar for World Lupus Day
May 6, 2024
Sunset view of the Motlawa River embankment with historical buildings in Gdansk, Poland.
National Member News – Hello from Poland
March 18, 2024
Rare Disease Day 2024 banner with people from diverse backgrounds and colourful handprints symbolising global unity and awareness for rare diseases
Rare Disease Day 2024!
February 29, 2024

Library

  • null

    Consequences of medication unavailability on patient anxiety

  • null

    Living with lupus in 2020

  • null

    Country Level Data Belgium

  • null

    Patient Panel I on Treatment

Latest Videos

Lupus 100 questions Banner
AI GPT Lupus europe
Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
2 days ago

🏆 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
... See MoreSee Less

7 days ago

🏆 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/
... See MoreSee Less

2 weeks ago

🟣 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!
... See MoreSee Less

🟣 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!
2 weeks ago

#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!
... See MoreSee Less

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).

MISSION

To be the voice of lupus in Europe and empower the national organisations for people living with lupus.

VISION

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

CORE VALUES

Empowerment, Independence, Vitality, Fact-Based, Transparency

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.

  • Jeanette Andersen
    Jeanette Andersen
    Chair
  • Annemarie Sluijmers
    Annemarie Sluijmers
    Vice-Chair, Secretary
  • Elfriede Wijsma
    Elfriede Wijsma
    Vice-Chair, Treasurer
  • Francesca Marchiori
    Francesca Marchiori
    Board Member
  • Alain Cornet
    Alain Cornet
    Secretariat
  • Zoe Karakikla-Mitsakou
    Zoe Karakikla-Mitsakou
    Project Manager
  • Sara Badreh
    Sara Badreh
    PAN Coordinator

ETHICS & GOVERNANCE

From 2021 LUPUS EUROPE moved and became a  Belgium based non-profit organisation. Our Articles of Association can be found here:

Articles of Association 2024

 

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:

      • 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

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

  • 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

  • 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.

  • 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.

202120172015

STRATEGIC PLAN 2023-2028

LUPUS EUROPE has an organisational framework in which the plan for the fourth strategic period, 2023 to 2028, has come into effect.

For the five year duration of the Strategic plan, we will concentrate on the following 4 strategic objectives: 

  1. PEOPLE WITH LUPUS in Europe participate in, and benefit from, lupus research
  2. MEMBER ORGANISATIONS are enthusiastic and empowered
  3. LUPUS EUROPE is heard and active
  4. Attract best resources to build a sustainable organisation

Year after year, we progress towards the goals we have set.  Our last activity report is available HERE.

PROJECTS & WORK

To deliver our Strategic plan, we have initiated, and continue to initiate  several projects on our own. Some of our key ongoing initiatives include

  • The establishment of a Patient Advisory Network (PAN)
  • The active collaboration to EULAR (EUropean League Against Rheumatism) Recommendations – Patient’s Version
  • Living with Lupus in 2020– an electronic survey, results from which have been published in Lupus, Science and Medicine and also presented at EULAR and other other key medical Congresses on lupus such as the European Lupus Meeting
  • Living with Lupus in 2024 – an electronic survey, results from which we are hoping to see published in a renowned medical journal. Some results were presented at the 2nd ERN ReCONNET Congress and others will be presented at EULAR 2025.
  • The establishment of Patient Panels, where people living with lupus around Europe exchange thoughts on a critical topic
  • Having a vibrant Annual Convention that brings together our National Members

Learn more about LUPUS EUROPE Projects & Activities…

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.

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
2 days ago

🏆 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
... See MoreSee Less

7 days ago

🏆 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/
... See MoreSee Less

2 weeks ago

🟣 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!
... See MoreSee Less

🟣 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!
2 weeks ago

#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!
... See MoreSee Less

Jeanette Andersen
Chair

About Jeanette

Jeanette Andersen has a Masters degree in German and Philosophy from the University of Copenhagen. In 2011 she was diagnosed with systemic lupus erythematosus, which (in combination with a lot of comorbidities) forced her to go into early retirement. Since then, she has immersed herself in the role of a volunteer in the area of rheumatology with a special focus on patient engagement in clinical research.

She is the Chair of Lupus Europe, a EUPATI trained patient expert on medicines Research & Development and the leader of the Lupus Europe Patient Advisory Network. She is also a patient representative (or e-PAG) and a Steering Committee Member in ERN ReCONNET as well as a trustee in the Danish Lupus group underneath Gigtforeningen (the Danish Rheumatism Association). She is a EULAR PARE Committee Member and Chair of the subcommittee on Education & Research as well as Leader of the Editorial Board and Edgar Stene Prize working groups. She also sits on the ACTion Council on patient engagement in rheumatology research.

She has developed an exercise programme for lupus patients, that has been endorsed by both ERN and EULAR and at present she is focussing on developing educational materials on better communication between doctors and patients.

Annemarie Sluijmers
Vice-Chair, Secretary

About Annemarie

Annemarie is from the Netherlands, she lives in a village east of Amsterdam. She was diagnosed with Skin Lupus and Sjögren´s Syndrome in 2001.

In her working life, she worked as a legal secretary (for over 15 years) and a paralegal (for 4 years) in an international law firm. As volunteer, she works at the local House Cinema (“Filmhuis”). Since 2011 she has also worked as volunteer for the Dutch Lupus Foundation (NVLE) in the Lupus APS Committee and for the last three years as general member for the board (dealing with the administration of (new) members of the foundation).

Annemarie has a special interest in skin involvement with lupus. She wants to raise the voice for patients in general. In 2017, she started as Co-opt advisor for Lupus Europe in an EPF Task Force and as a representative for Lupus Europe at the Global Skin 2017 Conference of IADPO.

Elfriede Wijsma
Vice-Chair, Treasurer
Elfriede Wijsma

About Elfriede

Elfriede is from the Netherlands, she was diagnosed with CDLE (skin Lupus) in 2000 after having wrong diagnosis several times. Since her diagnosis, living with Lupus on a daily base as meaningful as possible, became her challenge. Not just for herself but for Lupus patients in general.

This is also her motivation to join the Lupus Europe Board.

Elfriede has a bachelor’s degree in Social Work and a postgraduate degree in Service Management. She has worked for a long time as manager in several organizations for the homeless, residential youth care and crisis and disaster relief.

Elfriede founded her own company 6 years ago, together with a number of colleagues.

The company develops and produces innovative sun protection products for people with sun-related conditions. In addition, she gives presentations about living with UV-sensitive skin.

As a volunteer, Elfriede has experience within other patient associations, and as a member of the communications group in Lupus Europe

Elfriede is particularly interested in all aspects of patient empowerment and in Skin Lupus, in particular the overlap in symptoms between patients with Skin Lupus and SLE.

Francesca Marchiori
Board Member

Francesca Marchiori is an Italian Lupus patient. She was born in Rome and still lives there. She is a mechanical engineer and has been living with SLE for more than 30 years. After experiencing glomerulonephritis in 2000, she made the decision to become more actively involved with patient associations. Initially, with the Italian patient group, then progressed to Lupus Europe, and eventually also became involved with EULAR.

Her primary professional background lies in engineering research within the field of steel production, making the role of Patient Research Partner for EULAR and Lupus Europe PAN member particularly fitting for her. In 2022 she followed a course for Patient Experts in Digital Technologies for Health.

Alain Cornet
Secretariat

About Alain

Secretariat LUPUS EUROPE: Alain worked as a Global Finance executive with Procter & Gamble for over 32 years, in positions such as regional CFO for the Balkans, Head of Taxation for Europe, Middle East and Africa, and finally Head of Global Indirect Taxation. In parallel he joined the OECD WP9 Technical Advisory Group in 2008 and in that role, was one of the key contributors to the OECD International VAT guidelines, and a speaker in various International OECD conferences. This Business and International Organisation background gave him significant experience in the areas of Finance, Strategy, running international operations, working with Governments, lobbying, negotiation and presentation skills, … In 2015, he decided to gradually shift his career focus to supporting charities, a move that will be fully completed by the end of 2017. As husband to Bernadette, Chair of the French-speaking Belgian Lupus group, he has been involved with the Lupus patient community for over 10 years. He served as LUPUS EUROPE’s Treasurer from 2012 to 2014. In 2015, he became General Secretary of LUPUS EUROPE, and in that capacity, advises and supports the board in its responsibilities, and manages the day to day operations of LUPUS EUROPE, as well as various projects such as the Patient panels or the 2017 Research Workshop.

Alain is currently engaged in multiple projects including representing the Lupus Community in the European reference Network ReCONNET, being part of European Joint program on Rare Disease Work Paper 20 on Clinical trials, and Treasurer of EURORDIS.

Zoe Karakikla-Mitsakou
Project Manager

Coming soon…

Sara Badreh
PAN Coordinator

About Sara

Sara is a biochemist by education who after spending some years conducting research in the field of immunology at the Karolinska Institute in Stockholm, Sweden moved to Brussels to work in Policy and Advocacy. She is a lupus patient herself and was diagnosed at the age of 16 and is very passionate about patient advocacy and how to best link the patient needs with the scientific perspective.

 

After giving birth to her first son, Elias, she started her own consultancy helping organisations with the management of multi-stakeholder projects at EU level. She might be a familiar face to some of you since she previously was part of the Lupus Europe board of trustees. Fun fact, during 2019 she ran the 5-borough series in New York to show that lupus patients can do anything they set their minds to. The 5-borough series is a series of races where you run all the 5 boroughs in New York during one year which includes 3 half-marathons, one 16 km and one 10 km races.

LUPUS EUROPE Uniting people with Lupus throughout Europe
Send