Welcome - Apert Syndrome (AS) Community
What is Apert Syndrome (AS) ?
Apert syndrome is a complex condition caused by premature fusion, or early closure, of one or more of the sutures (specialized joints between skull bones that expand during normal brain growth) that separate the bony plates of the skull. Apert syndrome is a condition that affects the craniofacial structures and the limbs. A syndrome is a disease or disorder that has more than one identifying feature or symptom. Children with Apert syndrome have bicoronal synostosis, midface hypoplasia and complex syndactyly of the hands and feet. Bicoronal synostosis means that both of the coronal sutures of the skull have fused together, causing an abnormal head shape and potentially increased pressure on the growing brain. Midface hypoplasia means that the upper two-thirds of the face do not grow normally, causing an abnormal appearance, dental problems (an abnormal bite) and maybe other problems such as sleep apnea. Complex syndactyly is a condition in which the fingers and toes are joined together, or webbed, because the bones in the tips of the digits are fused. Most children with Apert syndrome have delayed developmental milestones, though this varies from child to child. Apert syndrome requires highly specialized treatment by a team of craniofacial medical and surgical subspecialists.
Source: Seattle Children's HospitalApert Syndrome (AS) Resources
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RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.