Genetic deafness consultation
What is genetic deafness?
Deafness is the most common sensory deficit; it affects 1 in 1000 children at birth, 1 in 700 children before adulthood and a large percentage of the adult population. Deafness is therefore not rare, but it includes a large group of rare diseases of genetic origin. It is currently estimated that 80% of childhood deafness has a genetic origin. The genetic share of deafness appearing in adulthood remains to be determined but is likely to be significant. More than 100 different genetic forms are currently identified in isolated deafnesses and more than 500 different syndromes including deafness have already been described.
Genetic deafness explained to children
Document d'information sur la consultation de surdités génétiques pour les enfants
Brochure « La consultation de génétique de votre enfant »
What are the expert centres?
There are expert centres in France for genetic deafness :Genetic deafness logo
3 reference centres :
- Hôpital Necker- Enfants Malades, site dedicated to children, Dr Sandrine Marlin.
- La Pitié Salpetrière Hospital, site dedicated to adults, Dr Isabelle Mosnier.
- Lille University Hospital, Dr Catherine Vincent-Delorme.
20 centres of expertise spread throughout metropolitan France and Reunion Island are also attached to them.
Information
Deafness Cards
HandiConnect
HandiConnect has published 7 tip sheets on hearing disability to guide healthcare professionals in their daily practice with deaf or hearing-impaired patients.
RogerVoice
RogerVoice facilitates conversations for the deaf and hearing-impaired people and opens up a world of possibilities.
Urgence 114
Le 114 est un numéro d’appel d’urgence pour les personnes sourdes et malentendantes. Ce numéro unique, national, gratuit est accessible par visiophonie, tchat, SMS ou fax, 24H/24, 7J/7.
Charities and structures
Surdi Info
Surdi Info is a service for both parents who learn that their child is deaf or hearing-impaired and people who discover that they are losing their hearing.
Fondation pour l'Audition
The Fondation Pour l'Audition aims to unite talents to advance the cause of hearing and help deaf and hearing-impaired people to live better every day.
Association nationale de la Langue française Parlée Complétée (ALPC)
French Association for the Promotion and Development of the Cued Speech.
Association AIFIC
For all people, implanted or not, who are interested in this surgical technique which has revolutionised the lives of people who are deaf or hearing-impaired.
CRESAM
Le CRESAM, Centre National de Ressources Handicaps Rares – Surdicécité a pour vocation de venir en aide à toute personne présentant une double déficience sensorielle, visuelle et auditive, sur le territoire français.
Fédération Nationale des Sourds de France
La Fédération Nationale des Sourds de France, reconnue d’utilité publique en 1982, rassemble plus de 80 associations membres adhérents et de 5 000 membres.
Société Française de Santé en Langue des Signes
La SFSLS est composée de professionnels de la santé sourds et entendants, communiquant en LSF (Intermédiateurs, interprètes, secrétaires, IDE, médecins, psychologues, assistantes sociales, etc. ) et travaillant dans les secteurs public et privé.
Videos
L'oeil et la main - Thérapie génique, enquête sur un futur proche
Our partners
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