The CNR Wilson

The mission of the French National Reference Centre for Wilson’s Disease (CNR Wilson) is to improve the management of patients suffering from this condition.

It is coordinated by Dr. France Woimant and is based in the Neurology Department at Hôpital Lariboisière, 2 rue Ambroise Paré 75010 Paris.

(Contact: cnr.wilson@lrb.aphp.fr)

The National Reference Centre for Wilson’s Disease was accredited by the French Minister for Health and Solidarity in October 2005 (Decree dated 06 October 2005, Journal Officiel 246 of 21 October 2005). It was gradually set up throughout 2006.

Since June 2016, The National Reference Center belongs to Inborn Metabolic Rare Diverses network.

The National Reference Centre associates clinical teams with complementary skills to enable the optimum management of patients with Wilson’s disease, from infancy to adulthood.

The missions of the CNR Wilson are to:

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  • Organise the availability of care
  • Coordinate the management of patients
  • Manage patients because diagnosis and treatment are particularly complex
  • Organise multidisciplinary consultations
  • Define guidelines and treatment protocols
  • Inform and train health professionals
  • Coordinate research activities
  • Assure epidemiological watch and patients follow up

 

The CNR Wilson is a multi-sites centre which comprises:

  • 1 coordinator-site based at Hôpital Lariboisière (Paris)
  • 3 constituent-sites: Hôpital Bicêtre (Le Kremlin-Bicêtre), Hôpital Paul Brousse (Villejuif) and Hôpital Femme-Mère-Enfant (Lyon)
  • 6 competence centres: Besançon, Bordeaux, Lille, Marseille, Rennes and Toulouse

At each site, multidisciplinary teams of paediatricians, hepatologists and neurologists can manage patients with Wilson’s disease and ensure their outpatient follow-up with open-care physicians. Nurses trained in managing the disease provide information for patients and their families. For patients who require it, a rehabilitation plan can be set up with the family by doctors, physiotherapists, speech therapists and social workers. The psychological monitoring of patients can also be organised.

The objectives of the CNR Wilson are to:

laboratoire cnr

  • provide training for health professionals involved in managing this disease
  • try to better understand the epidemiology of the disease by maintaining a register of all patients with Wilson’s disease who consult doctors in France
  • work in close collaboration with the European network of health professionals and patient associations involved in this disease: EUROWILSON
  • work closely with the Association Bernard Pépin for patients with Wilson’s disease, whose head office is based at Hôpital Lariboisière in Paris