How do I find a center of excellence in Treacher Collins syndrome (TCS)?
Treatment is often managed by a multi-disciplinary craniofacial team that usually includes specialists in genetics, audiology (hearing loss), plastic surgery, oral surgery, otolaryngology (ear, nose and throat), orthodontics, speech pathology and psychology. A craniofacial team in your area can be found by talking to doctors about who they recommend or using the list provided by FACES: The National Craniofacial Association under "Medical Centers".
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What doctors should someone with Treacher Collins syndrome see?
Children and adults with Treacher Collins syndrome (TCS) may be seen by a craniofacial clinic for treatment and management. The medical team may include ear, nose and throat specialists (pediatric otolaryngologists), plastic surgeons, dentists, speech pathologists, hearing specialists (audiologists), eye doctors (ophthalmologists), psychologists and geneticists.
Due to the variability in the signs and symptoms of Treacher Collins syndrome (TCS), treatment is individualized. Some people with TCS may have few or no medical needs and, therefore, may not require treatment for the condition.
A craniofacial team in your area can be found by talking to doctors about who they recommend or using the list provided by FACES: The National Craniofacial Association under "Medical Centers".
- Treacher Collins Syndrome - NORD (National Organization for Rare Disorders). (2013). Retrieved February 29, 2016, from http://rarediseases.org/rare-diseases/treacher-collins-syndrome/
- Katsanis SH, Jabs EW. Treacher Collins Syndrome. 2004 Jul 20 [Updated 2012 Aug 30]. In: Pagon RA, Adam MP, Ardinger HH, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2016. Available from: http://www.ncbi.nlm.nih.gov/books/NBK1532/