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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.

 

See the page dedicated to the Genetic Deafness centres

 

Taking proper care of deaf or hearing-impaired people in a medical setting

 

 

See the video on YouTube

 

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.

 

  

Go to handiconnect.fr

 

RogerVoice 

 

 

RogerVoice facilitates conversations for the deaf and hearing-impaired people and opens up a world of possibilities.

 

 

 

Download RogerVoice

 

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.

 

 

 

 

Plus d'informations sur Urgence 114

 

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.

 

 

Website Surdi Info

 

 

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.

 

Website Fondation pour l'Audition

 

Association nationale de la Langue française Parlée Complétée (ALPC)

 

French Association for the Promotion and Development of the Cued Speech.

 

 

Website ALPC

 

 

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.

 

Website AIFIC

 

 

Videos

 

L'oeil et la main - Thérapie génique, enquête sur un futur proche

 

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