About this Webportal
Author(s): E. Schaefer, Created: 2010/04/29, Reviewed by: I. Astigarraga, J. Donadieu, R. Haupt, M. Minkov, R. Price, last update: 2013/11/20
Following the incidence, each year 1400-2500 children and adults in the European Union develop Langerhans Cell Histiocytosis (LCH) and associated syndromes. In several cases, patients have to wait many weeks, months or even years until diagnosis. Once confirmed, patients and treating physicians have to deal with histiocytosis, searching for scientifically approved information concerning adequate diagnosis, therapy and follow-up. They should be enabled to easily find reliable information and to obtain online expert support. The Histio Net project, which has received European funding, is supported by 30 partners with high experience in LCH and associated syndromes. Among other objectives, it tends to create an online expert support.
The three core elements of the Histio Net online expert support have been defined by a team of histiocytosis experts:
Different work groups have reviewed available international and national guidelines and recommendations for diagnosis, treatment and follow-up of LCH. A synthesis of this information was generated and published after approval of many involved specialists.
Frequently Asked Questions:
For the development of FAQ lists, many different websites were reviewed to find good examples and to decide on the optimum structure for the lists which will be separate for professionals and for patients. The FAQ lists for patients/parents and the public were elaborated in collaboration of histiocytosis experts and members of different patient associations for histiocytosis. Different chapters were built for LCH, HLH, ECD and rare diseases in general.
Maps of Experts:
For the creation of maps of experts, many different websites were reviewed to find good examples for mapping experts. The solution finally chosen is matched to the special needs of histiocytic disorders. All collaborating partners will be asked to compile lists of their national histiocytosis networks. Following the validation of the expertise of the listed centers, national maps of experts will be created, divided into centers of reference with high knowledge about LCH and/or associated syndromes and centers which are experienced in treating these diseases.