This event is made possible by sponsorship from organisations including pharmaceutical companies, med tech companies and service providers none of which have influenced the event content or the choice of speakers. Sessions delivered with input from these organisations will be marked as such on the programme.

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CDKL5 UK

CDKL5 UK is a UK-based charity dedicated to supporting individuals and families affected by CDKL5 deficiency disorder, a rare and complex genetic condition that often causes early-onset epilepsy and significant developmental challenges. The organisation is led by parents and carers, giving it a strong foundation in lived experience and a deep understanding of the challenges families face.

The charity provides practical and emotional support to families through guidance on navigating health, education and social care systems, as well as offering counselling and peer support opportunities. It shares clear, up-to-date information about the condition and creates opportunities for families to connect through events, family days and online communities.

CDKL5 UK also plays an important role in advancing research. It encourages and supports participation in clinical trials and empowers families to contribute to research through its community networks. The organisation raises awareness of CDKL5 among healthcare professionals, policymakers and the wider public, helping to improve understanding and care.