CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neurodevelopmental impairment.
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CDKL5 Deficiency Disorder

CDKL5 deficiency is a rare X-linked genetic condition which results in early onset, difficult to control, seizures, and severe neuro-developmental impairment. Due to the location on the X chromosome CDKL5 deficiency affects more girls than it does boys

Case Studies

Our families have put together some case studies based on their experiencing of raising a child/young person or adult with CDKL5 deficiency you can read more here.




Click to find out more about CDKL5 deficiency events which are organised by our CDKL5 Alliance members and other organisations within the community.



Our Mission

Cooperation: Provide an environment for communication and collaboration between CDKL5-related patient advocacy groups (PAGs) around the world, helping newer groups grow, helping parents in countries without a PAG to create one, and helping all groups be more effective.

Research and care: Encourage and aid researchers, pharmaceutical companies, and clinicians in their efforts to treat CDKL5 Deficiency by communicating about research plans, fostering the creation of Centers of Excellence, helping pharmaceutical companies find potential trial participants around the world, and serving as a collective voice of families living with CDKL5 Deficiency.

Awareness: Create awareness of CDKL5 Deficiency by helping member PAGs identify patients in their countries, develop better methods of fundraising, and generate publicity for this disorder.

New CDKL5 Cases are registered every year
CDKL5 Researchers working together worldwide
CDKL5 Families Affected worldwide
CDKL5 Organization working worldwide

Team 2018

CDKL5 Members