The Lupus Academy

Dr Raquel Faria and Professors Ricard Cervera and Ronald van Vollenhoven discuss selected highlights from the 15th European Lupus Meeting. Join us for a groundbreaking discussion on the latest in lupus.

Disclaimer: During Lupus Academy podcast episodes, participants may refer to off label use of medicines for patients with lupus. Lupus Academy does not make any recommendations about using a medicine outside the terms of its approved licence for use.

In this episode host Dr. Raquel Faria (Portugal) is joined by Professors David Isenberg (UK) and Ricard Cervera (Spain) to navigate the high-stakes complexities of haematological manifestations in SLE.  Through the lens of two remarkable 20-year patient journeys, the experts explore the "coagulation tightrope"—the life-threatening balance between aggressive systemic clotting and profound bleeding risks.
Disclaimer: ‘During Lupus Academy podcast episodes, participants may refer to off label use of medicines for patients with lupus. Lupus Academy does not make any recommendations about using a medicine outside the terms of its approved licence for use.’

Since this episode was released for the first time in May 2023, two recent studies of note have been published, providing an important update on patients’ experiences of SLE in Latin America and Europe. These publications are summarisedbelow (full publications are available online):

Study Summary:The Patient Experience of SLE in Latin America
Quintana R, et al. Living with systemic lupus erythematosus in 2024: Latin American experience based on a patient survey. Clin Rheumatol. 2025 Dec 5. doi: 10.1007/s10067-025-07867-1.

This 2024 GLADEL network survey of 1,180 Latin American patients reveals a profound "well-being gap" in Systemic Lupus Erythematosus (SLE) care. While 80.9% receive antimalarials and two-thirds feel "controlled," clinical stability masks a pervasive psychosocial crisis.
The data shows that 60% of patients suffer from anxiety or depression, and 62.1% report significant professional or educational setbacks. Physical burdens remain high, including joint involvement (71.4%), skin issues (47.4%), and life-altering renal complications (37.5%). Furthermore, 43.7% noted negative impacts on emotional and sexual health.
Despite heavy reliance on corticosteroids (55.7%), uptake of newer biologics remains low at 11.1%. These findings serve asa critical call for Latin American healthcare systems to adopt a "Treat-to-Target" model. This approach must move beyond mere symptom management to prioritize the restoration of a patient’s social, mental, and professional agency.
 
Study Summary:Unmet Needs of SLE Patients in Europe
Cornet A, et al. Experiences and unmet needs of persons living with systemic lupus erythematosus in Europe: LupusEurope's 2024 Swiss knife survey. Autoimmun Rev. 2025 Jul 31;24(8):103838. doi: 10.1016/j.autrev.2025.103838.

The 2024 "Swiss Knife" survey by Lupus Europe reveals a significant "perception gap" among 4,525 patients across 36 countries. While 66.5% believe their lupus is "under control," only 7.9% remained flare-free over five years, indicating a normalization of chronic symptoms.
Several unmet needs remain. The study found that fatigue is the most prevalent symptom (84.9%) but remains the least addressed in clinical plans. Joint and muscle pain also remain high. Patients seek remission or low disease activity, yet 32% lack access to essential non-pharmacological therapies like physiotherapy. Over 31% report insufficient consultation time, often leaving discontent unvoiced.  Finaly, adoption of digital health tools remains low at 14.3%.
The survey concludes that European SLE management must shift toward patient-centered care, prioritizing better physician-patient communication and digital health integration to address the disease’s true physical and psychological burden.

In this episode Dr Raquel Faria is speaking with Jeanette Andersen (Chair of Lupus Europe) and Professors Ricard Cervera and Maria Dall'Era.
You can visit the Lupus Europe website here: ⁠https://www.lupus-europe.org/⁠

Disclaimer: ‘During Lupus Academy podcast episodes, participants may refer to off label use of medicines for patients with lupus. Lupus Academy does not make any recommendations about using a medicine outside the terms of its approved licence for use.’

In this episode our host Dr Raquel Faria, together with Professors David Isenberg and Richard Furie, explore the first major update to the Lupus Treatment Guidelines in 25 years, highlighting aggressive steroid sparing, universal hydroxychloroquine use, and the revolutionary potential of CAR T-cell therapy. Discover how precision medicine is shifting the standard of care from broad immunosuppression to targeted, personalized recovery.
Disclaimer: During Lupus Academy podcast episodes, participants may refer to off-label use of medicines for patients with lupus. Lupus Academy does not make anyrecommendations about using a medicine outside the terms of its approved license for use.

Get ready for an exciting deep dive into the 14th Annual Meeting of the Lupus Academy, held in Berlin (9–11 October 2025)!
In this episode, Dr. Raquel Faria joins meeting Chair, Professor Maria Dall'era, to uncover the top educational highlights andbreakthroughs from the event. Catch-up on presentations at https://lupus.academy/ (available until 31st December 2025).

Disclaimer: During Lupus Academy podcast episodes, participants may refer to off-label use of medicines for patients with lupus. Lupus Academy does not make anyrecommendations about using a medicine outside the terms of its approved license for use.