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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
Craniofacial malformations
ENT and cervicofacial malformations
Rare oral and dental anomalies
Pierre Robin syndromes
Congenital sucking/swallowing disorders
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:
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genetic anomalies
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maternal illness during pregnancy
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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 www.cassandravion.com.
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.