On this page, we provide information on the neurofibromatosis referral centres (coordinating and constituent sites) managing both children and adults. The information is intended to be as complete as possible but may differ from one centre to another due to the specificity of their mode of operation.
Créteil
As a coordinating site, the Henri-Mondor Hospital site coordinates the following five missions of CERENEF within the NF-France network:
- Patient care.
- Genetic counselling.
- Research.
- Education.
- Training.
More specifically, patients with neurofibromatosis type 1 are admitted, monitored, and treated.
CERENEF - Referral Centre for Neurofibromatosis France
Coordinating site
Henri-Mondor Hospital
Dermatology department
1 rue Gustave Eiffel
94010 Créteil Cedex - France
Nurse coordinator
Sabine Moryousef – E-mail: sabine.moryousef@aphp.fr
Tel.: +33 (1) 49 81 44 61
Fax : 01 49 81 37 97
Administrative office of the dermatology department
Christine Lescure – E-mail: christine.lescure@aphp.fr
Alexandra Vo – E-mail: alexandra.vo@aphp.fr
Tel.: +33 (1) 49 81 25 01
Fax : 01 49 81 25 08
Head of the dermatology department and referring physician
Pr. Pierre Wolkenstein - Dermatology
Head of the pathology department
Pr. Nicolas Ortonne - Dermato-pathology
Associated doctors
Pr. Khaled Ezzedine – Dermatology
Dr. Christina Bergqvist – Dermatology
Dr. Marouane Ben-Kahla – Dermatology
Dr. Salah Ferkal - Rheumatology
Dr. Laura Fertitta – Dermatology
Dr. Arnaud Jannic - Onco-dermatology
Dr. Jean-Christophe Moreno – Dermatology
Dr. Ouidad Zehou – Onco-dermatology
Nurse coordinator
Sabine Moryousef - State-certified nurse
Research Nurse
Audrey Colin - State-certified nurse
Psychologist
Marie-Laure Armand
Social worker
Joséphine Redlich
Tel.: +33 (1) 49 81 25 22 (follow-up of patients within the department by appointment, from Monday to Friday, from 9 am to 5 pm)
Dermatology department assistant
Christine Lescure
Alexandra Vo
Head of the medical genetics department
Pr. Benoît Funalot - Genetics
Dr. Ariane Lunatti-Rozie - Genetics
Medical genetics consultant
Bérénice Hebrard - State-certified nurse
Genetics department assistant
Pascale Ringot
Tel.: +33 (1) 49 81 28 61
E-mail: pascale.ringot@aphp.fr
Neurofibromatosis type 1
Neurofibromatoses (formes atypiques)
Neurofibromatoses segmentaires
Schwannomatosis
Sclérose tubéreuse de Bourneville
Legius syndrome
Adults
Lyon
Constitutive site
Onco-dermatology unit
Consultation CSA – 3th étage
28 rue Laennec
69008 Lyon - France
Administrative office
Tél. : 04 78 78 59 96
Fax: +33 (4) 78 78 27 16
E-mail: cecile.morin@lyon.unicancer.fr
Referring physician
Dr Mona Amini-Adle – Dermatologie
Médecin associé
Dr Stéphane Pinson – Génétique
Neurofibromatosis type 1
Neurofibromatoses (formes atypiques)
Legius syndrome
Supported neurofibromas
Dermatological surgery
Children and adults
Paris
Constitutive site
Neurosurgery department
16 avenue de la Nouvelle Pitié
47-83 boulevard de l’Hôpital
75456 Paris 13
Administrative office
Tél. : 01 42 16 26 04
Fax: +33 (1) 42 16 26 05
E-mail : secretariat.nf2-schwannomatose.psl@aphp.fr
E-mail: emmanuelle.feve@aphp.fr
Head of Department
Pr Olivier Sterkers
Referring physician
Pr Michel Kalamarides – Dermatologie
Associated doctors
Dr Danièle Bernardeschi – ORL
Dr Béatrice Parfait – Génétique moléculaire
Dr Matthieu Peyre – Neurochirurgie
Pr Marc Sanson – Neuro-oncologie
Dr Mustapha Smail – ORL
Dr Dominique Vidaud – Génétique moléculaire
Referral Centre for Neurofibromatosis France
Peripheral schwannomas
Vestibular schwannomas
Children and adults
Nantes
Constitutive site
Dermatology department
place Ricordeau
44093 Nantes
Administrative office
Tel.: +33 (2) 40 08 31 16
E-mail: secretariat.dermatologie@chu-nantes.fr
Head of Department
Pr Brigitte Dreno
Referring physician
Pr Sébastien Barbarot – Dermatologie
Médecin associé
Dr Christelle Nicol – Dermatologie
Neurofibromatosis type 1
Children and adults
Toulouse
Constitutive site
Paediatric Neurology Unit
330 avenue de Grande Bretagne
31059 Toulouse
Administrative office
Mme Danielle Santamaria
Tél. : 05 34 55 85 75
Fax: +33 (5) 34 55 87 10
E-mail: santamaria.d@chu-toulouse.fr
Referring physician
Pr Yves Chaix – Neurologie pédiatrie
Neurofibromatoses
Children