Elijah's Hope is a non-profit organisation aimed at bringing together families affected by the rare disease, Apert Syndrome.

This site will collate information about Apert syndrome and hopefully, as time goes on, become a repository of knowledge for both families and practitioners.

If you would like to be able to view our current medical articles that we have already gathered, you will need to join, which is FREE. It's a simple sign up that will give you full access to the site. You can do so here.

Cares Collective

We have a new addition to our offers - Carers Collective is a space for lived experience carers to come together and find connection and resources to ease isolation, boost wellbeing and encourage empowerment. If you are a carer and want support, please head over there.

On the Elijah's Hope site...

family focusIf 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 blogsblog posts 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!

rare connect
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.

medical articles
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.

Living with Apert syndromeAt 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.





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