If you’re affected by Apert syndrome in your family, why not send in your story? Sharing stories can help other people who may be feeling isolated and, for new families, can really help dispel myths and provide useful information.

Read our latest blogs to keep up to date and find out more about life with Apert syndrome. Kaddy Thomas, the founder of Elijah’s Hope who also has Apert syndromes, writes candidly about her life and how she and Elijah not only manage but thrive!

Join our safe and moderated international community for Apert syndrome on the RareConnect platform available in seven languages. Here, you can share your experiences, ask questions and make new friends. Click through to find out how.

Become a member for free & read a growing range of expert research studies and articles about different aspects of the origin and medical care of people with Apert syndrome.

At times with Apert syndrome, life can be a relentless cycle of hospital, surgery and recovery, on top of every day living and going to school.

Read our Living with Apert syndrome series of articles from young people with Apert syndrome and families raising a child with the condition.