We need every family to register their loved one with our UK CASK registry. It is essential that we have an accurate count of the number of cases of CASK disorders in the UK.
It can be lonely and isolating living with a CASK gene disorder. Our map is bi-annually updated to show where our families are located. Please get in touch if you’d like to be put in touch with a local family. This map can’t exist without families registering with the UK registry. If you can’t find your family on the map then make sure you’ve registered with our registry.
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.
We have a growing number of research studies for you get to get involved in. These range from online surveys to donating biosamples. On occasions we are asked not to publish study opportunities publicly. On these occasions we will email patients/carers using our mailing list. Please therefore ensure you are registered and on our mailing list here.
CASK gene related disorders are a spectrum of conditions. No two children are the same. Each will write their own destiny.
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.
©2024 CASK Research UK
(CASK Research Foundation)
Registered charity no. 1197434 England & Wales
