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://paper.li/ElijahsHopeCIC/1414491381?edition_id=7e3e1490-2d1d-11e9-b211-0cc47a0d164b … Stories via @DrPas84Ele @SanfilippoRx @ROB_CAMP #brand #children
- Can you decode the message? You can download this fabulous BSL font from @BDA_Deaf here http://www.tinyurl.com/BDAfont You can download a free copy of the finger spelling alphabet from @DeafBooks here https://tinyurl.com/fsalphabet pic.twitter.com/GR6z5Po2I2
- The Disability Benefits Consortium is gathering the experiences of disabled people who applied for Universal Credit. If this is you please complete their survey and add your voice to the campaign http://bit.ly/2Sg7BP3 Survey closes end of February. #UCandme
- New edition: Elijah’s Hope Updates! https://paper.li/ElijahsHopeCIC/1414491381?edition_id=533d1da0-2c54-11e9-b211-0cc47a0d164b … Stories via @KathEvans2 @RarePOV @DrAnneMurphy #ad #parentingtips
- Children ‘falling off the grid’amid surge in pupils leaving mainstream schools: Children’s commissioner warns that 60,000 children, many with special educational needs, are permanently out of school as families feel they have no choice but to home educate http://ow.ly/XvUL30nC9cc
