Abstract Background The origin of Narrative Medicine dates back to more than 20 years ago
at an international level. Narrative Medicine is not an alternative to evidence-based …

In order to address the main challenges related to the rare diseases (RDs) the European
Commission launched the European Reference Networks (ERNs), virtual networks involving …

Systemic lupus erythematosus (SLE) is characterized by multisystemic clinical
manifestations ranging from a relatively mild involvement to potentially life-threatening …

Objective The aim of this work is to explore patient'unmet needs of rare and complex
rheumatic tissue diseases (rCTDs) patients during pregnancy and its planning by means of …

SLE presents significant challenges for patients and health-care professionals (HCPs), both
across Europe and worldwide. Improving health-care outcomes for patients with SLE …

ABSTRACT The International Rare Diseases Research Consortium (IRDiRC) Diagnostic
Scientific Committee (DSC) is charged with discussion and contribution to progress on …

Abstract Background Rare diseases (RDs) are often complex, serious, chronic and multi-
systemic conditions, associated with physical, sensory and intellectual disability. Patients …

Objective To map existing organizational care pathways in clinical centers of expertise that
care for pregnant women affected by rare and complex connective tissue diseases (rcCTDs) …

Introduction Evaluating rare disease interventions poses challenges for HTA agencies,
including uncertainties and ethical issues and tensions. INESSS has recently adopted a …

Objective Among the most significant challenges in SLE are the excessive diagnosis delay
and the lack of coordinated care. The aim of the study was to investigate patient pathways in …