Diagnostic Delays and Challenges : To enhance awareness of SLE among non-specialists, ongoing medical education meetings were organized and a symptom/complaint sheet were distributed to help raise suspicion of the disease. An immunological test prescription aid sheet was also provided to facilitate early patient identification by grouping relevant symptoms and investigations. Immunological results have been standardized across Alsace, including guidance for prescribers to ensure appropriate referrals. Additionally, an online tele-expertise platform has been established to assist independent clinicians in making accurate diagnoses and improving early referrals. Finally, once a diagnosis is made, a verbatim proposal has been developed in collaboration with doctors, a psychologist and patients to improve the experience of communicating the diagnosis.

Therapeutic Management : A document outlining a personalized care plan was created to give patients a comprehensive overview of their treatment (Figure 1). Furthermore, multidisciplinary consultation meetings, either in person or remotely, have been reinforced to address complex cases (e.g., refractory SLE, SLE pregnancy).

Holistic Care : A modular day hospital has been established to provide a wide array of consultations tailored to patient needs. These include medical and pharmacist consultations, physiotherapy, dietary advice, physical activity, occupational therapy. A consult with occupational medicine specialist is available to assist patients to continue their professional activity. Co-morbidities such as osteoporosis and cardiovascular issues, along with vaccinations, are also addressed with a specialized nurse. Additionally, the SLE program developed by the therapeutic education team further enhances the range of services available.