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.
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...
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.