Resources for Treacher Collins Syndrome

A short list of organizations and reading that have been useful to people with Treacher Collins syndrome and their families. Links were last checked September 12, 2026.

Personal Perspectives on TCS:

• Treacher Collins Syndrome – A Personal View
• Tony’s Treacher Collins Syndrome Page (on this site)

Craniofacial Information:

• Changing Faces
• FACES – The National Craniofacial Association
• About Face
• Friendly Faces
• Children’s Craniofacial Association
• International Craniofacial Institute
• World Craniofacial Foundation
• March of Dimes
• Operation Smile
• Wide Smiles

Support Groups:

• Treacher Collins Family Support Group
• MUMS: National Parent-to-Parent Network
• Bully Free Kids

Literature:

• “Please Stop Laughing at Me” by Jodee Blanco

Cleft Lip/Palate Resources:

• American Cleft Palate-Craniofacial Association (ACPA)
• Cleft Advocate

Ear/Hearing Info:

• Listen Up Web
• Association of Medical Professionals with Hearing Losses
• Eurion – waterproof hearing aids
• American Academy of Audiology

Airway/Jaw Distraction Info:

• Trachey Kidz NZ
• Treacher Collins Syndrome: Treatment & Management (Medscape; includes distraction osteogenesis)