We are pleased to be working in partnership with Rareminds – the first specialist, non-profit, rare disease counselling and psychotherapy service in the UK. Rareminds provide a free and confidential online counselling service to families who are affected by CDKL5 Deficiency Disorder (CDD). All Rareminds therapists are fully trained and experienced counsellors, psychotherapists or psychologists…
A warm welcome to our new Development and Engagement Champion! CDKL5 UK is pleased to announce the appointment of our new Development and Engagement Champion, Bethan Vaughan. This exciting step forward has been made possible by a generous and private donation. Beth comes to CDKL5 UK with a wealth of experience, having worked within the…
Strength in Every Challenge, Hope in Every Movement Footsteps Centre provides intensive physiotherapy for children and young people with neurological disorders, helping them build strength, confidence, and independence. Our personalised therapy programmes combine different approaches to achieve the best possible outcomes for your child. Central to our therapy is the specialist piece of equipment, called…
We are delighted to join an alliance of over 200 organisations, with representatives from 7,000 different rare and genetic conditions, who work together to improve the lives of people in the UK with genetic, rare and undiagnosed conditions; advocating for fast and accurate diagnosis, good quality care and access to best treatments. Around 3.5 million…
