A new CDKL5 Centre of Excellence, as recognised by NHS England, is being set up at Bristol Royal Hospital for Children, specifically for children and adults with CDKL5 CDD in the UK, led by Paediatric Neurologist Dr Sam Amin.
The initiative hopes to help support the holistic care of your child, in partnership with your local medical team, by providing specialist clinical input as well as focused pastoral care and support.
Please send us your contact details so that we can reach out to you to offer you these services.
We would like to make sure that all families are up to date with the latest developments in CDKL5 and that patients are given the opportunity to take part in any new drug trials.
Please get in contact with Emma Claydon (CDKL5 Research and Care Coordinator) by calling 07596274442 or by mail Emma.Claydon@uhbw.nhs.uk