Reference Center for Genetic Deafness

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).

See the centres Surdités Génétiques

Constitutive Centres

Competence Centres

CHU Toulouse

2, rue Viguerie – TSA 80035

31059 Toulouse Cedex 09

Team

Dr Delphine Dupin-Deguine

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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