The blog has been quiet since our great convention in Vienna and over the holiday period but that doesn’t mean we have been inactive. Here’s a glimpse of some of the past and upcoming activities that LUPUS EUROPE is part of. In addition to those listed there have also been other meetings with sponsors, the new World Lupus Federation and so on.

Past events

30th September – the third in a series of workgroup meetings at EPF on Access to Healthcare. Secretary, Katharine Wheeler, attended.

13th October – EULAR WAD Conference Brussels, Towards more integrated health care in Europe: Strengthening patients’ access to cross-border care and enhancing health professionals’ mobility – Experiences, challenges and policy developments in the rheumatic and musculoskeletal disease field. Chair Kirsten Lerstrøm represented LUPUS EUROPE.

28-29 October – EFPIA Health Collaboration Summit, Brussels. Attending on behalf of LUPUS EUROPE was former Co-opt Bernadette van Leeuw and Secretariat Manager Alain Cornet.

23 Nov – PaSQ (Patient Safety and Quality of care) information and discussion meeting, Madrid, Spain. Further information on PaSQ here.

24-25th November – Regional Advocacy Seminar, Lund, Sweden. Strengthening the patient’s perspective in EU policy-making and research. Representatives from Nordic countries have been invited to attend the seminar.
Kirsten Lerstrøm has been selected by EPF to represent LUPUS EUROPE and present on advocating patient driven research policies.

25th-26th November – European Medicines Agency Human Scientific Committees’ Working Party with Patients’ and Consumers’ Organisations (PCWP) meeting, London.  Judith King represented LUPUS EUROPE.

8-10th January – Board of Trustees meeting – Convention planning and other matters.

IMG_4456
The 2015-2016 Board of Trustees and Secretariat – front row – Anne Charlet (Vice Chair), Jeannette Andersen (Youth), Kirsten Lerstrøm (Chair) – back row – Kirsi Myllys (Treasurer), Katharine Wheeler (Secretary), Alain Cornet (Secretariat), Blanca Rubio (Vice Chair).

Upcoming events

4-5th February – PaSQ meeting, Barcelona, Spain.

10-11th March – Preciseads III European Conference, Granada Spain. LUPUS EUROPE Vice-Chair Blanca Rubio is member of the Ethics Committee.

22-23 March – European Patients Forum AGM, Brussels. Previous annual reports can be found here. The 2013 report is of particular interest for an introduction to the key patient issues in Brussels since the beginning of the Millenium. The theme this year is Patient Empowerment, Mental health and Partnerships. LUPUS EUROPE Secretary Katharine Wheeler and Claudine Goyers (PRP) will attend.

6-10th April – Autoimmunity Congress, Leipzig, Germany. LUPUS EUROPE Vice-Chair Blanca Rubio is a patient contact for this congress.

9-11th April – IAPO (International Association of Patients’ Organizations) Global Patients’ Congress, London, UK. The theme this year is “Innovation improving sustainable access: how to boost your reach and impact”. LUPUS EUROPE Vice-Chair Anne Charlet will attend and present on “Patient mobilisation, empowerment and patient advocacy”.

15-17th April PARE Eular Conference, Sofia, Bulgaria. The theme this year, as last year, is “Patient Centered Care – Taking Control”. Attending for LUPUS EUROPE will be Vice-Chair Blanca Rubio and Amaia Dominquez.

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🎥 Last week, during #EULAR2026, the Chair of Lupus Europe's Board of Directors, Jeanette Andersen, was interviewed on EULAR TV about #LupusGPT.

Watch as she explains what #LupusGPT is and why reliable, understandable lupus information is important for patients and for lupus care.

🦋 #LupusGPT is patient-led, built with clinicians, patients and IT experts, and grounded in trusted lupus resources.

#LupusGPT is not a replacement for healthcare professionals, but it helps people better understand lupus information and prepare more informed questions for their physicians.

📺 Watch the full interview on the EULAR YouTube channel:

www.youtube.com/watch?v=plqZt7J142I

Thank you EULAR for giving space to patient-led innovation on EULAR TV!
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📣Don’t forget!

Our #EULAR2026 Recap Webinar is coming up on June 15 at 19:00 CET,

Learn some key highlights from one of our most exciting congresses in recent years, including scientific insights brought directly by speakers through short videos.

📩 Register now! email secretariat@lupus-europe.org
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📣Don’t forget!

✅ #EULAR2026 has finished, but we still have a lot to tell you!

🦋 Day 2 at the EULAR Congress showed why patient involvement matters across research, care, digital innovation and outcome measurement.

🥰 Lupus Europe was proud to contribute to several key sessions.

💬 Zoe Karakikla-Mitsakou, our General Secretary, presented #LupusGPT and #EasyLupus in the Meet the EULAR Expert session on AI as a partner in care, highlighting patient-led, reliable and accessible digital information.

🌍 Zoe also spoke in the session “Bridging the Gap: Expanding Rheumatology Access for Underserved and Underrepresented Communities”, sharing insights from local patient panel work in Portugal and how patient organisations can help identify real-world barriers to care, especially for people we do not always reach.
Thank you to Dr Daniel Guimaraes de Oliveira for his contribution and support in this important project.

🧩 Our Chair, Jeanette Andersen, delivered an inspiring presentation on non-pharmacological interventions in connective tissue diseases, bringing the patient perspective into discussions on physical activity, and the need for psychosocial support and personalised care beyond medication.

📊 Another highlight of the day was Jeanette co-chairing, together with Prof Laurent Arnaud, the session on measurement of disease activity in SLE clinical trials. The session explored how we measure lupus arthritis, treatment outcomes and remission, and why outcome measures must better reflect the reality of living with lupus.

💫 Our team also followed key sessions and poster tours on epidemiological data for advocacy, access and empowerment, and therapeutic advances in lupus.

And throughout the day, we continued welcoming visitors at the Lupus Europe booth, sharing our projects, tools and conversations with the wider rheumatology community.

Would you like to hear more from our team?

📅 Join our #EULAR2026 recap webinar on 15 June at 19:00 CET, Paris time.

You will hear key takeaways from our team, plus videos from some speakers explaining their presentations in patient-friendly language.

✅ To register, email secretariat@lupus-europe.org
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🤩 #EULAR2026 has been a blast!

Now it’s time to look back at some of the key lupus-related insights, data and messages from this year’s Congress.

Join Lupus Europe for our EULAR 2026 recap webinar:

📅 June 15
🕖 19:00 CET
📍 Zoom

✅ Register by sending an email to [secretariat@lupus-europe.org](mailto:secretariat@lupus-europe.org)

Don’t miss it!
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🤩 #EULAR2026 has
LUPUS EUROPE Uniting people with Lupus throughout Europe
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