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Why a FHU for rare diseases?

The whole of local expertise and resources in rare diseases gathered within a dedicated consortium

Why do the hospitals and universities need a common structure to treat rare diseases?   

 

Although rare diseases can be clinically and genetically very different, they share many common features, amongst which, the following facts:  

  • Each pathology affects a very small number of patients and therefore it is difficult to collect sufficient medical data, thus making clinical research and treatment difficult 
  • They can be triggered off at almost any stage in life, but just over half of these rare conditions affect children.   
  • They are chronic and continue developing
  • In many cases the patients lose their independence and their quality of life diminishes. 
  • There is no treatment in 95% of the cases 

MaRCHE is the result of a pledge to bring together the local players in the area of research into these rare diseases, the goal being to bring down the walls in our reflection on common issues in order to improve the way we manage these disorders.  

The initiative was awarded a « label » by the A*MIDEX University Foundation, the APHM (the Marseilles Public Hospital Group) and Inserm (The French National Institute of Health and Medical Research). It is funded by the A*MIDEX Foundation.