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Resources

Craniofacial Family Advisory Council at Connecticut Children’s

A group consisting of Craniofacial Team parents, family, and staff, who meet quarterly to discuss how to make the team grow and stay family focused. They coordinate parent to parent support, plan events for patients, host fundraisers, and more.

For more information or to become a formalized Craniofacial Family Advisor call the office at 860.545.9360.

Parent-to-Parent Network at Connecticut Children’s

Our Parent-to-Parent Network provides support for parents and pediatric patients by connecting them to other Connecticut Children’s families who have experienced similar diagnoses and treatments. For more information, please call 860.545.9360.

Craniofacial Special Purpose Fund

Connecticut Children’s Craniofacial Special Purpose Fund helps purchase items not covered by the regular Craniofacial department budget.  The items purchased are given to patients who receive care at the Craniofacial Department at Connecticut Children’s. Items include Pigeon bottles and nipples, Dr. Brown’s special bottles, Haberman special feeders, special cups, craniofacial awareness materials, patient events, and more. The special bottles are not covered by insurance but are vital to help our cleft babies grow big and strong for surgery.

You can help! All monies in the special purpose fund are donated.  Patients, providers, family and friends all help with fundraising. If you would like more information about the special purpose fund or find out how you can help, please call the Craniofacial Team at 860.545.9360.

 External Organizations

American Cleft Palate-Craniofacial Association

The American Cleft Palate-Craniofacial Association aims to advance patient care and research for individuals affected with cleft lip, cleft palate and other craniofacial anomalies.

Ameriface

Ameriface provides a variety of resources for families of children with facial differences, including education materials, networking opportunities, a toll-free support hotline and more.

Children’s Craniofacial Association

The Children’s Craniofacial Association offers several resources for children and families affected by facial differences.

Craniokids

Craniokids provides a forum where families can seek and provide emotional support, share experiences, and learn about craniosynostosis.

The International 22q11.2 Foundation

The International 22q11.2 Foundation provides resources and support on the 22q11.2 deletion or duplication.

National Foundation for Ectodermal Dysplasia

The National Foundation for Ectodermal Dysplasia empowers and connects those affected by ectodermal dysplasia.

BEYOND THE FACE
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