Cutaneous neurofibromas: patients’ medical burden, current management and therapeutic expectations: results from an online European patient community survey
Published in the Orphanet Journal of Rare Diseases (OJRD) 2019
Authors: Guiraud M, Bouroubi A, Beauchamp R, Bocquet A, Grégoire JM, Rauly-Lestienne I, Blanco I, Wolkenstein P, Schmitt AM
Neurofibromatosis type 1 is an inherited condition with variable phenotypic expression and a high medical and social burden.
Objectives: 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.