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.
- Tom Oakley’s dreams came true when he got through to the second round of BBC One talent show The Greatest Dancer. The 16-year-old has to manage the chronic illness cystic fibrosis. When he first started to dance “my lungs used to burn,” he says. https://t.co/kSP0mAopHm
- New edition: Elijah's Hope Updates! https://t.co/dFu2UBxKtQ Stories via @carterjenny16 @KarenAd89081735 @NickyEos #autism #sleep
- RT @TaniaLT: Please give a follow to these SEND-related twitter accounts run by my & @RenataBplus3’s social media consultancy: @SurreySENDLO @FestableUK @SENDLawyers @ElijahsHopeCIC & of course @SpcialNdsJungle & @SEND_CA !
- Calm zone from @childline could be helpful for your child suffering from panic or anxiety. It has breathing exercises, activities, games and videos to help let go of stress that children can try to find what works for them. https://t.co/dFq1K4FrKF https://t.co/jrKI7IiqbK
- New edition: Elijah's Hope Updates! https://t.co/L050W5gUPB Stories via @Child_Neurology @christinezoo @CarrieMaisie #autism #feedly
