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.
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.
- New edition: Elijah's Hope Updates! https://t.co/B43O8gk6kR Stories via @ThatRealDani @autisticlyaaron @jennywalkabout
- How to a new drug for cystic fibrosis, is starting to change the future patients thought they’d never have https://t.co/8Rql9CpE8q
- New edition: Elijah's Hope Updates! https://t.co/zglmIJDqxu Stories via @carterjenny16 @vesanopanen @gdmorewood #coproweek #microsoftteams
- RT @SpcialNdsJungle: NEW POST: There's a new Internet safety hub specially designed to keep children with SEND from getting ‘lost in digital space’ We hear from Internet Matters, who've created it https://t.co/BYG4zcHzef
- ‘It Will Consume Your Life’: Four Families talk about their struggle to find answers for Rare Diseases in The New York Times https://t.co/sRLAJ1ZfcL
