What is craniofacial microsomia?

Individuals with craniofacial microsomia can have one part of the face that is smaller, and this most commonly includes the ears and jaw. Craniofacial microsomia can also affect the eyes, cheeks, kidneys, and spine.

Craniofacial microsomia is the second-most common birth condition affecting the face. The most common is cleft lip or palate.

Clinicians and researchers are working on a standard way to diagnose the condition. Currently, we think that 1 in 5,600 to 1 in 26,550 children are born with this condition each year. It is more common in boys than in girls.

Why is craniofacial microsomia research important?

There are too many things we don’t understand about craniofacial microsomia. There are a lot of things that could be better with craniofacial microsomia treatment.

That’s why we’re on a mission to transform craniofacial microsomia care, by doing research to understand the condition, understand the outcomes that matter to patients and families, and find better ways to help individuals, families and healthcare providers improve treatment and make decisions.

Why does it take so long to find answers?

To make progress in learning more about craniofacial microsomia, we have to break it down into many questions and study them one at a time, like: Which genes contribute to craniofacial microsomia? Why does CFM affect people in different ways? When does a specific treatment, like surgery for the jaw, help? Then we can put the answers together to understand the larger picture of craniofacial microsomia.

Each study can take years. Fortunately, we’re teaming up with craniofacial microsomia experts and individuals with craniofacial microsomia (and their parents) throughout the U.S. and internationally. Like us, these experts are united by a passion for finding better ways to help families. And we won’t give up until we have answers.

How can families help?

Our research wouldn’t be possible without help from people with craniofacial microsomia – and we’re incredibly grateful that hundreds of families have participated in our research so far. This helps us gather the information we need to study craniofacial microsomia – and the more information we have, the faster we can find answers.