Patient Resources | Overview
When your child is diagnosed with a craniofacial condition, your questions and concerns can sometimes feel overwhelming. At Boston Children’s Hospital, our approach to treatment is more than medical and surgical care — it’s also education and support for your entire family. We hope you find these resources helpful in preparing for your visit and understanding the journey ahead.
Boston Children's resources for patients and families
Experience Journal: An online collection of thoughts, reflections, and advice from kids and caregivers about going through many types of medical experiences.
Hale Family Center for Families: Dedicated to helping families locate the information and resources they need to better understand their child’s particular condition and take part in their care.
Medical Coping Clinic: This group of psychologists and psychology trainees can help children and families learn skills to promote healthy coping with new and ongoing medical stressors. They can also help parents learn the best ways to help their children and meet with healthy siblings who may be having a difficult time.
External resources for patients and families
Please note that neither Boston Children’s Hospital nor the Cleft and Craniofacial Center at Boston Children’s unreservedly endorses all of the information found at the sites listed below.
- AmeriFace: Provides information and emotional support to individuals with facial differences and their families and increases public understanding through awareness programs and education
- Children’s Craniofacial Association: A nonprofit organization that addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions.
- EarCommunity: A warm and supportive community for those with microtia and other conditions affecting the ears. EarCommunity also provides helpful information about parent advocacy, self-advocacy, and patient advocacy.
- FACES: The National Craniofacial Association: Provides financial support for non-medical expenses to patients traveling to a craniofacial center for treatment. Eligibility is based on financial and medical need.
- Foundation for Faces of Children: A New England-based, not-for-profit, 501(c) 3 organization that provides clear, accurate information and other educational resources to children born with craniofacial conditions and their families. The Foundation was started by Boston Children’s Hospital plastic surgeon John B. Mulliken, MD, and a handful of parents whose children were receiving treatment at Boston Children’s.
General craniofacial resources
- Changing Faces
- Federation for Children with Special Needs
- Headlines Craniofacial Support
- International Craniofacial Institute
- World Craniofacial Foundation
Cleft lip and palate resources
- Cleft Advocate
- Cleft Lip & Palate Association
- American Cleft Palate-Craniofacial Association
- Smile Train