Reference Center for Genetic Deafness
Centre Surdités
Deafness is the most common sensory deficit; it affects 1 in 700 children at birth and affects a large percentage of the adult population. Deafness, therefore, is not a rare disease but in fact it brings together a large number of rare diseases of genetic origin. The genetic origins of childhood deafness are currently estimated at 80%. The genetic part of deafness appearing in adulthood remains to be determined but will probably be of the same order. More than 100 different genetic forms are currently identified in isolated deafness, and more than 400 different syndromes including deafness have already been described.
The reference center for genetic deafness, unique in France, is based on two different sites, thus facilitating the child/adult transition:
- the Necker-Enfants Malades hospital, a site specially dedicated to children
- the hospital of La Pitié Salpetrière, site dedicated to adults.
Approximately 700 families are seen annually in the center. The care of these patients is provided by a team comprising a geneticist, a genetic counselor, a clinical psychologist, a nurse, a midwife and two secretaries; working in close collaboration with the 2 services of ENT, referents in the management of deafness. In addition, a national network was set up through 17 competence centers for genetic deafness.
As part of the Rare Disease Plan, the reference center for genetic deafness is linked to the national SENSGENE network (coordinated by Professor Hélène Dollfus, CRMR Cargo, CHU Strasbourg).
Coordination Centre
Hôpital Necker Enfants Malades
Service de génétique médicale
Institut IMAGINE
149 rue de Sèvres
75 743 Paris cedex 15
Team
- Docteur Sandrine Marlin, Coordonnateur et médecin
- Docteur Laurence Jonard, Biologiste
- Eva Leite Freire, Secrétariat
- Sybille De Bergh, Psychologue
- Souad Gherbi, Conseillère en génétique
- Fabienne Saint Jalmes, Infirmière
- Ines Ben Aissa, Chargée de mission SENSGENE
Make an appointment
-
Children: 01 44 49 57 44
-
Adults : 01 42 16 13 95
Contact the centre
-
Children
Phone: 01 71 39 69 04
Email: genetique.surdite@nck.aphp.fr -
Adults
Phone: 01 42 16 26 04
Email: genetique.surdite@psl.aphp.fr
Constitutive Centres
Hôpital de La Pitié Salpetrière
47-83 bd de l’Hôpital
75013 Paris
Team
Dr Isabelle Mosnier
Appointment
By phone : 01 42 17 74 40
CHU Lille
2, avenue Oscar Lambret
59037 LILLE CEDEX
Team
Dr Catherine Vincent-Delorme
Appointment
By phone : 03 20 44 49 11
Competence Centres
CHU Toulouse
2, rue Viguerie – TSA 80035
31059 Toulouse Cedex 09
Team
Pr Patrick Calvas
Prendre rendez-vous
Tel: 05 61 77 90 79
Hospices Civils de Lyon
3, quai des Célestins - BP 2251
69229 LYON CEDEX 02
Team
Dr Linda Pons
Appointment
Tel: 04 27 85 55 73
CHU Grenoble
Bd de la Chantourne CS 10217
38000 Grenoble
Team
Dr Klaus Dieterich
Appointment
Tel : 04 76 76 72 85
HUS Strasbourg
1, place de l'Hôpital - BP 426
67091 Strasbourg Cedex
Team
Pr Hélène Dollfus
Appointment
Tel: 03 88 11 67 55
CHU Rennes
2, rue Henri Le Guilloux
35033 Rennes Cedex 9
Team
Pr Benoit Godey
Appointment
Tel: 02 97 01 42 03
CHU Rouen
1, rue de Germont
76031 Rouen Cedex
Team
Dr Anne-Marie Guerrot
Appointment
Tel: 02 32 88 87 47
CHU La Réunion
11 rue de l'Hôpital
97460 SAINT PAUL
Team
Dr Marie-Line Jacquemont
Appointment
Tel: 02 62 35 91 47
CHU Bordeaux
12 rue Dubernat
33404 TALENCE CEDEX
Team
Pr Didier Lacombe
Appointment
Tel: 05 57 82 03 63
CHU Clermont-Ferrand
30 place Henri Dunant - BP 69
63003 CLERMONT-FERRAND
Team
Dr Fanny Laffargue
Appointment
Tel: 04 73 75 06 54
CHU Le Mans
194, avenue Rubillard
72037 Le Mans cedex 09
Team
Dr Dominique Martin-Coignard
Appointment
Tel: 02 44 71 01 84
CHU Dijon
1, bd Jeanne d'Arc - BP 77908
Dijon
Team
Dr Sébastien Moutton
Appointment
Tel: 03 80 29 53 13
Hôpital Robert Debré
48, boulevard Sérurier
75019 PARIS
Team
Dr Laurence Perrin
Appointment
Tel: 01 40 03 36 18
CHU Reims
45 rue Cognacq Jay
51092 Reims Cedex
Team
Dr Céline Poirsier
Appointment
Tel : 03 26 78 82 45
AP-HM
80, rue Brochier
13354 MARSEILLE CEDEX 5
Team
Dr Sabine Sigaudy
Appointment
Tel: 02 40 08 32 45
CHU Nantes
5, allée de l'Ile Gloriette - BP 1005
44093 NANTES CEDEX 1
Team
Dr Marie Vincent
Appointment
Tel: 02 40 08 32 45
CHRU Tours
2, boulevard Tonnelé
37044 Tours Cedex 9
Team
Pr Annick Toutain
Appointment
Tel : 02 47 47 47 99
CHU Besançon
2 place Saint-Jacques
25030 BESANCON CEDEX
Team
Pr Lionel Van Maldergem
Appointment
Tel : 03 81 21 94 53
CHU Nancy
29, av. du Maréchal de Lattre de Tassigny
54035 NANCY CEDEX
Equipe
Dr Laeticia Lambert
Appointment
Tel : 03 83 34 43 76
CHU de Saint-Etienne
42055 Saint- Etienne Cedex 02
Team
Dr Renaud Touraine
Appointment
Tel : 04 77 82 88 09
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