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 measures to improve care announced after a ‘appalling’ review of segregation for inpatients with autism and learning disabilities. They include a new working group for learning disabilities and autism & funding specialist advocates to review the care https://t.co/lpyWYYjylq
- New edition: Elijah's Hope Updates! https://t.co/1jDuwxTIGj Stories via @Tog4ShortLives @CarrieMaisie @ssr4n #autism #education
- SEND inquiry takedown: Parents Vs DfE - shocking to see the difference in perception of the SEND reforms between the two! https://t.co/jH6y5pjt71
- New edition: Elijah's Hope Updates! https://t.co/ux3dV8PuuB Stories via @pompecanada @RACC_UK @grhluna24 #adifl #shrewsbury
- The trainees with learning disabilities on how training to be hairdressers in a salon has changed their lives. https://t.co/aFM8eQz8kN
