See the links below for detailed advice on family support, prognosis, common medical issues and stories from families who have been there.
Since we are a tiny community it is so important for every family to register with the community registry, or the data collection programme (DCP), as it is formally called. This is a patient owned database that collates and collects de-personalised medical information of children with CASK.
Advice, ideas, understanding CASK gene mutations and links to services that can help
CASK gene related disorders are a spectrum of conditions. No two children are the same. Each will write their own destiny.
Some medical conditions are more common in those with CASK gene mutations.
The charity Unique has created this informative guide on CASK related disorders. Please download.
We are always in need of photos for our promotional materials. Please download the photo permission form and return to us with some photos of your amazing CASK children.