Cutaneous neurofibromas: patients' medical burden, current management and therapeutic expectations: results from an online European patient community survey.

Background: Neurofibromatosis type 1 is an inherited condition with variable phenotypic expression and a high medical and social burden. The objectives of this patient survey were to better understand the real-world experiences of patients living with cutaneous neurofibromas (cNF), to perceive their satisfaction and feelings about cNF current management (only laser and surgery are currently available), and to highlight their expectations of new therapeutic modalities.

Results: One hundred seventy patients from 4 European countries took part in the study, 65% (n = 110) were women and mean age was 39 years old.

Risk behaviour and patient preferences for an improved non-melanoma skin cancer prevention modality for organ-transplanted patients: a European, multi-country, online patient community study.

Immunosuppressants used in organ transplant patients increase the risk of non-melanoma skin cancer. This study aimed to evaluate patient behaviours towards skin cancer prevention methods and to understand characteristics of a future prevention strategy based on patients' perspective. Carenity, a global online patient community, enabled the recruitment of 200 adult patients with solid organ transplants from four European countries: France, Italy, Spain and Germany.