Patient Resources

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Contact the Cleft and Craniofacial Center

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.

Patient Resources at Boston Children's Hospital

The following resources are available at or authored by Boston Children’s Hospital. These programs and materials aim to help families better understand and cope with the medical conditions they face.

  • Medical Coping Clinic: A group of psychologists and psychology trainees with expertise in helping children and families learn skills to promote healthy coping with new and ongoing medical stressors. These doctors meet with children and families in the Outpatient Psychiatry Service and can help children:
    • Cope with feelings such as worries, anger, or sadness related to new or ongoing medical stressors
    • Prepare for medical procedures or surgery
    • Improve comfort and confidence with medical tasks such as swallowing pills, getting shots, and having blood draws
    • Learn how to better follow a medical treatment plan
    • Learn new ways to cope with symptoms of a medical illness or side effects from medical treatment

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.   

  • The Experience Journal: An online collection of thoughts, reflections and advice from kids and caregivers about going through many types of medical experiences. The site was designed by Boston Children’s psychiatrist-in-chief, David DeMaso, MD, and members of his team.
  • Psychiatry Consultation Service: Expert and compassionate pediatric psychologists, psychiatrists, social workers and other mental health professionals who understand the unique circumstances of hospitalized children and their families. The team provides several services, including:
    • Short-term therapy for children admitted to one of our inpatient units
    • Parent and sibling consultations
    • Teaching healthy coping skills for the whole family
    • Educating members of the medical treatment team about the relationship between physical illness and psychological distress
  • “Helping Your Child with Medical Experiences: A Practical Parent Guide” (PDF): Provided by Boston Children’s Department of Psychiatry, this free booklet includes information about:
    • Talking to your child about his or her condition
    • Preparing for surgery and hospitalization
    • Supporting siblings
    • Taking care of yourself during your child’s illness
    • Adjusting to life after treatment
  • 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. All patients, families and health professionals are welcome to use the Center’s services at no extra cost. The Center is open Monday through Friday from 8 a.m. to 7 p.m. and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information.
  • Boston Children’s Chaplaincy: A source of spiritual support for parents and family members. Our program includes nearly a dozen clergy members, representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions, who will listen to you, pray with you and help you observe your own faith practices during your child’s treatment.
  • Boston Children's International Center: A dedicated resource for patients and families from countries outside the United States. The Center can provide assistance with everything from reviewing medical records to setting up appointments and locating lodging. Contact the Center at 1-617-355-5209 or by emailing:

Craniofacial Communities and Foundations

  • 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.

Online Resources for Patients with Craniofacial Conditions and Their Families

Please note that neither Boston Children’s Hospital nor the Craniofacial Program at Boston Children’s unreservedly endorses all of the information found at the sites listed below.

General Craniofacial Resources

AboutFace International

Changing Faces

Boston Children’s Craniofacial Association

FACES: The National Craniofacial Association

Federation for Children with Special Needs

Forward Face

Foundation for Faces of Children

Headlines: The Craniofacial Support Group

International Craniofacial Institute

MUMS National Parent-to-Parent Network

World Craniofacial Foundation

Cleft Lip and Palate Resources

Cleft Advocate

Cleft Lip and Palate Association

Cleft Palate Foundation

Smile Train

The Cleft Club Online Support Group

Craniosynostosis Resources

Cranio Kids: Fun Friends and Craniosynostosis Support

Craniosynostosis and Positional Plagiocephaly Support, Inc. Craniosynostosis & Plagiocephaly Support Group

Facebook Group: Craniosynostosis Support for Parents and Guardians

Hemangioma/Vascular Malformation Resources

Angioma Alliance

Birthmarks and Hemangiomas InterNETwork Support

Birthmarks and Hemangiomas Support Group at

National Organization of Vascular Anomalies

Vascular Birthmarks Foundation

Information and Support for Teens and Younger Children

Advice to Those Who Look Different

Born to be Cleft

Make an Appointment

For an appointment, more information or to obtain a second opinion for your child, please call us at 617-355-6309 or email

International Patients

For families residing outside of the United States, please call Boston Children's International Health Services at 1-617-355-5209.

The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944