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FILNEMUS

Prise en charge des pathologies de l’unité motrice

FILNEMUS

  • Site: Timone University Hospital, Reference Centre for neuromuscular Diseases and ALS 
  • Coordinator: Pr. Jean Pouget
  • Composition: 10 neuromuscular RCRDs, 3 theme-based neuromuscular RCRDs,   2 mitochondrial RCRDs and 4 neuromuscular CCMRs,   7 patient associations, 8 knowledgeable societies,
  • To contact usFiliereFILNEMUS@ap-hm.fr
  • Website: http://www.filnemus.fr

Diseases covered and number of patients

The diseases managed by FILNEMUS are those affecting the motor system.  They include muscular diseases (myopathies), diseases of the neuromuscular junction, rare diseases of the peripheral nerves and infantile spinal amyotrophy. 

It has been assessed that 40.000 to 50.000 persons are affected by muscular disease in France.  

Objectives:

  • Improve the care of patients affected by neuromuscular disease 
  • Improve their diagnostic management 
  • Develop data bases and international therapeutical trials 
  • Encourage European and international integration.  

The players :

CR : Neuromuscular reference centres:

CR : Theme-based neuromuscular reference centres 

CR : Reference Centres for Mitochondrial Diseases

  • CALISSON centre (CRMR) - Coordinator : Pr V. PAQUIS – Sites : Nice, Marseille
  • CARAMMEL centre (CRMR) - Coordinator : Pr A. MUNNICH - Sites : Paris (Hospitals: Necker, Lariboisière, Bicêtre), Angers, Bordeaux

CC : Competence Centres for neuromuscular diseases

  • BURGUNDY-FRANCHE COMTE centre (CCMR) - Coordinator : Dr A. JACQUIN-PIQUES –Sites : Dijon, Besançon
  • BRITTANY Centre (CCMR) - Coordinator : Pr F. ZAGNOLI – Sites Brest, Rennes, Roscoff, Vannes
  • NORMANDY Centre (CCMR) - Coordinator : Pr F. CHAPON – Sites : Caen, Rouen
  • TOURS Centre (CCMR) - Coordinator : Dr S. PELLIEUX – Site : Tours

 

National Network