ERN ReCONNET SLE Disease Group 2025 update

The year 2025 has been a period of significant progress for the Systemic Lupus Erythematosus (SLE) Disease Group, marked by new leadership under ad interim Disease Coordinators Marta Mosca and Matthias Schneider and the contribution of new ePAG advocate Zoe Karakikla-Mitsakou. The Group focused on both scientific advancement and the development of practical tools for patients and physicians managing this complex disease.

Key achievements and activities for 2025 include:

• Scientific and Educational Projects: The Group completed the SLAKE (SLE Knowledge Assessment Score) project, validating a multilingual bank of items for patient self-assessment. On the training front, three modules were created for the Accredited Training Course covering Cutaneous Lupus, Late-onset Lupus, and Thrombocytopenia. This clinical effort was complemented by the contribution to the ALERT project and the identification of specific SLE variables for the registry.
• Webinars and Presentations: The educational program featured major sessions, including the “Patient Partnership – Lupus 100 and beyond” webinar on September 22nd and the EULAR 2025 Recap Webinar on July 10th. At the ERN ReCONNET Scientific Congress 2025, the Group presented on topics ranging from the “Living with Lupus” survey to managing rare manifestations and the evolution of SLE management over the last decade. Notably, the Group received the Best Poster Presentation Award for the “Lupus100” project.
• Patient Support Tools: A breakthrough was achieved with the Consultation Cards and the beta testing of LupusGPT, a spoken version of EasyLupus. Additionally, the Group successfully collected 831 RarERN Pathways stories from SLE patients, which were analyzed to better understand the patient journey.
• Ongoing and Planned Initiatives: As 2025 concludes, work continues on Red Flags, Pathways in SLE, and disease-specific registry items. Looking ahead to 2026, the Group plans to hold a consensus meeting on RarERN Pathways, publish findings from the patient stories, and deliver new webinars on CAR-T therapy for SLE and the 2025 EULAR recommendations for SLE with kidney involvement.

The Group remains dedicated to integrating artificial intelligence and standardized clinical data into daily practice while continuing to expand patient-centered tools like Lupus 100 and RarERN Pathways across multiple languages and cultures.