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For new parents

You just received the diagnosis.
You don't have to figure this out alone.

CCA has supported families from the moment of diagnosis for over 35 years. We'll connect you with parents who've walked this path, specialists who understand, and resources that actually help.  We believe the best antidote to the challenges, trials, and trauma of living with a medically complex condition is connection.

Download the “You First Year” PDFLearn about the Syndrome
Right now

Three things you can do today.

1

Talk to a parent volunteer

CCA's Family Connections program matches you with a trained parent who has a child with a similar condition. Free, confidential, and available by phone or email.

Connect Now
2

Read our new parent guide

A clear, plain-language guide to craniofacial conditions, what to expect, how to talk to your medical team, and how other families have navigated this.

Download PDF Here
3

Apply for financial travel assistance

If your child needs to travel to see a craniofacial specialist, CCA can help with costs. Start your application today - no obligation.

Apply for Assistance
Understanding

What does "craniofacial condition" mean?

Craniofacial conditions affect the bones, tissues, and features of the face and head. They range in severity and type - but they don't define who your child is or what their life will look like.

CCA supports families across a wide range of conditions, including trauma and those who remain undiagnosed. Some of the most common include:

"I searched online and found only medical terms. CCA gave me real answers from real parents - that made all the difference."
Mother of a child with Crouzon Syndrome, diagnosed at birth
Medical care

Finding the right specialist.

Craniofacial care is highly specialized. CCA can help you navigate to the right team - including major centers in Texas, California, Florida, Pennsylvania, Massachusetts, and Washington

How to choose a craniofacial center
What to look for, what questions to ask, and how to prepare for your first appointment.
Craniofacial centers near you
To ensure comprehensive and quality medical care, CCA links to the American Cleft Palate-Craniofacial Association’s list of ACPA Approved Teams. ACPA encourages these teams to patients and families to consider first for cleft and craniofacial healthcare needs. CCA recognizes the quality of the ACPA Team Approval process and encourages CCA families to also consider first using an ACPA Approved Team. 
Find a specialist ➜
A Parent’s Journey to Acceptance
I look into eyes that ask “How did this happen? What in the world do we do now?” The visions of their children did not include receiving the news that their child has a cleft lip and/or palate or craniosynotosis. All parents hope for a non-complicated pregnancy and a healthy birth.
You're not alone

Hear from other families.

Linda Flores Alcantara
My Blessed Life
Hi name is Linda Flores Alcantara I’m 32 years old...
Read the guide ➜
Whitney
Whitney, CCA Mom
The Retreat Weekend was a life changing...
Read the guide ➜
Ready to connect?
Talk to a parent who has been there.
Our Family Connections volunteers are trained parents -not professionals - who understand your specific condition. Available by phone or email.
Request a Connection ➜
When you're ready

The Annual Retreat is waiting for you.

CCA's Annual Family Retreat and Educational Symposium brings together hundreds of families, children, teens, and adults for three days of connection, education, peer mentoring, and joy. Many families describe it as the most important program CCA offers.

We understand if you're not ready yet - but when you are, we'll be here.

About the Retreat ➜
Children's Craniofacial Association
Supporting and inspiring individuals and families affected by facial differences since 1989.
15851 Dallas Pkwy. Ste. 245, Addison, TX 75001
‍
214-570-9099
Toll-free at 800-535-3643
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