About

A reference network for Langerhans Cell Histiocytosis and associated syndromes.

Summary

Several partners – medical experts in the field of care for Langerhans Cell Histiocytosis (LCH) patients and support groups from EU and outside EU – have agreed to put their efforts in common in order to share and disseminate knowledge and experience. Our first objective is to participate in improving care for patients concerned by LCH and other rare diseases belonging to the same ‘family’ of disease.

Introduction

A project for Langerhans cell histiocytosis and associated syndromes has received European funding and is supported by 30 project partners: physicians and representatives of patient associations involved in histiocytosis. Histiocytoses are very rare diseases affecting patients of all ages. Heterogeneous clinical presentations and unpredictable courses reach from involvement limited to skin or bone, with an excellent prognosis, to severe multi-system involvement associated with spontaneous poor outcome, requiring intensive cares. The heterogeneity of the disease necessitates a very particular competence from several medical specialists, whereas time and financial restrictions lead to difficulties in sharing acquired knowledge with patients and non-specialised treating physicians.