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The Referral Centre for Neurofibromatosis France (CERENEF) focuses on five missions: care, genetic counselling, research, education, and training.

The target pathologies are neurofibromatosis (type 1 and 2), schwannomatosis, Legius syndrome, and mosaic forms.

As part of the FIMARAD care network, the centre is committed to manage patients with orphan pathologies who are not assigned to a specific referralcentre if the competences are developed locally. Within the FIMARAD network, the exchange of experience and the sharing of knowledge between centresare key.

Regarding research, the referralcentre has developed projects in the following areas:

  • Therapeutic trials: Pierre Wolkenstein (Henri-Mondor Hospital) and Michel Kalamarides (Pitié-Salpêtrière Hospital).
  • Surgical techniques: Michel Kalamarides, Laurent Lantieri (Georges Pompidou European Hospital) and Philippe Decq (Beaujon Hospital).
  • Animal models: Pierre Wolkenstein, Piotr Topilko (Henri-Mondor Hospital), Michel Kalamarides and Marcello Giovannini (San Paolo Hospital, Milan).
  • Molecular biology: Benoît Funalot from the Genetics Department (Henri-Mondor Hospital) as well as Michel Vidaud, Éric Pasmant, and Dominique Vidaud from the Cochin Institute, Inserm team (genomics and epigenetics of rare tumours).
  • Clinical epidemiology: Pierre Wolkenstein and Émilie Sbidian (Henri-Mondor Hospital).

The educational mission is directed towards patients and their associations, especially in the therapeutic field. The implementation of Therapeutic Patient Education (TPE) Program dedicated to neurofibromatosis type 1 contributes to this mission.

The training mission is addressed to both healthcare and social professionals and aims to improve the knowledge of the diseases that are followed in the centre.

Tele-expertise and tele-consultation services (Camille Hua, Pierre Wolkenstein) have also been developed.