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Diseases covered by the TETECOU network


The French Rare Disease Network TETECOU covers all malformations of the head, neck and teeth.

These malformations exist either as isolated forms or associated with one or more clinical signs in an incidental manner or recognized as part of a syndrome.

These disorders are most often present at birth (congenital malformations) or acquired during the first weeks of life.   

They can be life threatening (due to breathing and eating difficulties) and cause functional (visual, auditory, language, etc.), morphological and psychological problems.

The disabilities, especially esthetic, caused by these diseases can have an impact on quality of life and are capable of disrupting family life as well as social, educational and professional inclusion.


More than 2100 malformation disorders of the head, neck and teeth...

Credit: Filière TETECOU

... among which:

Facial malformations


  • Cleft lip and/or palate

  • Facial clefts

  • Craniofacial microsomia

  • Cysts and fistulas of the face

  • Vascular malformations of the face

  • Facial paralysis

  • ...

13 fente labiopalatine faceCrédit : Cassandra Vion


Craniofacial malformations


  • Craniosynostosis

  • Faciocraniosynostosis

  • Craniodysostosis

  • Fibrous dysplasia with cranial involvement

  • Encephalocele

  • ...

Visuel scapho video 3D detouré 3Crédit : CRMR CRANIOST et Filière TETECOU


ENT and cervicofacial malformations


  • Malformations of the external and middle ear

  • Branchial cleft anomalies

  • Choanal atresia

  • Malformations of the larynx

  • Malformations of the trachea

  • Recurrent respiratory papillomatosis

  • ...

19 oreille aplasie majeure v2Crédit : Cassandra Vion


Rare oral and dental anomalies


  • Tooth agenesis

  • Amelogenesis imperfecta

  • Dentinogenesis imperfecta

  • Ectodermal dysplasias

  • Epidermolysis bullosa

  • ...

25 AI hypomature boucheCrédit : Cassandra Vion


Pierre Robin syndromes


  • Isolated Pierre Robin sequence

  • Stickler syndrome

  • Pierre Robin syndrome

  • ...

28 Pierre RobinCrédit : Cassandra Vion


Congenital sucking/swallowing disorders


  • CHARGE syndrome

  • Treacher-Collins syndrome

  • 22q11.2 deletion syndrome

  • Kabuki syndrome

  • Cornelia de Lange syndrome

  • ...

29 Syndrome CHARGECrédit : Cassandra Vion


Each of the malformations and diseases of the head, neck and teeth presents with different manifestations and varying degrees of severity.

A person with a given malformation may have only very mild signs while another may have severe manifestations.


The illustrations displayed on the pages of the website represent the severe forms of each of these disorders.


These malformations of the head, neck and teeth are caused by various factors, which can sometimes be a combination of:

  • genetic anomalies

  • maternal illness during pregnancy

  • infections, vascular accidents, exposure to chemicals or medications during fetal development


Often diagnosed before birth (antenatally) or at birth, their management, which is essentially surgical, takes place in the newborn period or later, up until the end of growth (18-20 years), in the networks specialized by type of malformations (CRMR and CCMR).  


These networks rely on their multidisciplinary expertise in the fields of surgery (craniofacial, plastic, ENT and dental surgeons; neurosurgeons, etc.), medicine (pediatrician, phoniatrician, etc.), paramedicine (specialized nurse, speech therapist, etc.), medical and social services (social worker, specialized educator) as well as psychological care (psychologists).

Illustrations by Cassandra Vion, scientific and medical illustrator

Rights granted exclusively for use on the French Rare Disease Network for malformations of the head, neck and teeth (TETECOU)’s website and the websites of the reference centers (CRANIOST, MAFACE, MALO, SPRATON) that it hosts.