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Goals & Assignments

of the FHU

OUR GOALS & ASSIGNMENTS

 

 

OUR GOALS

FHU MaRCHE has set up a programme to reinforce the visibility of our expertise and all the resources we have in the treatment and research into rare and chronic diseases in order to encourage cooperation between the local players and attract new opportunities for partnerships. 

OUR ASSIGNMENTS

The MaRCHE, university and hospital federation, dedicated to rare and chronic diseases affecting infants and adolescents is an innovative model of partnership.  

MaRCHE aims at developing innovative tools which will enable us to improve the way we diagnose and identify new patients, enhancing the medical and social management of these patients and their families, thereby identifying new therapeutic pathways.   

Thus, MaRCHE is organised around 5 main sectors of research:

  • Cohorts, data bases and technical facilities
  • Epidemiology, social sciences and humanities.   
  • Biology and genetics
  • Preclinical research and proof of concept 
  • Dissemination, enhancement and transfer of technology

The first stage of this programme has been developed for 3 groups of rare diseases, selected as “pilots” on the basis of the level of expertise attained in patient management and because of the existence of structured data bases and research teams working on them:  

  • rare neuromuscular diseases,
  • rare metabolic diseases in children,
  • rare, non-malignant blood disorders.  

The tools developed (models of interoperable date bases, tools to identify patients for clinical trials) will subsequently be deployed for all the rare diseases.