Tag: craniofacial disorders

My child has a condition called MFDM that affects only about 200 people in the entire world. When he was diagnosed with such a rare condition, we felt incredibly alone. I needed to connect with other families who would understand.

Preparing for a newborn is an exciting time for any parent. Here are some things to consider when you're preparing for a baby with a cleft lip/palate.

For parents who may be in the middle of a craniosynostosis journey with their child, here's what one mom learned about getting second opinions, traveling for care, and helmet therapy.

Shana has Treacher Collins, a condition where some of the bones & tissues in the face aren’t fully developed. Read what her dad wants you to know about her:

Each year, the month of July is the CDC’s Cleft and Craniofacial Awareness and Prevention Month. I actively worked to raise awareness this year during July, as I have for the last several years, but I must admit I found myself at the end of last month, wondering if my efforts on social media during the