Receiving a diagnosis of Apert syndrome is usually a very emotional experience. Whether a family learns about their child's condition during pregnancy or not until the baby is born, the news can turn what is usually a beautiful experience upside down, making it quite confusing and stressful. Because Apert syndrome is so rare - occurring just once in every 160,000-200,000 births - it can sometimes be challenging to find accurate, up-to-date and POSITIVE information about this condition. Even some medical professionals admit to never having treated a child with Apert syndrome in their careers.

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We feel that education truly is key to acceptance for individuals with Apert syndrome. We hope this site and all of the resources apertOWL is committed to providing can help families, friends and medical professionals seeking information about Apert syndrome. More importantly, we want others to know that while a journey with Apert syndrome will most definitely be a challenging one, it can be a beautiful one as well. 

 

Not only do we want to support the families who have a child diagnosed with this condition, we also provide resources and information to friends, extended family, medical professionals, educators and the general public. Click one of the content specific portals below for more information.