About us

The CDKL5 Registry is funded by the LouLou Foundation, which is dedicated to advancing research into the understanding and development of therapeutics for CDKL5 Deficiency Disorder. Since 2015, the LouLou Foundation has awarded and managed 31 projects in 41 labs worldwide.

The CDKL5 Registry is a joint effort of the Orphan Disease Center at the Perelman School of Medicine, University of Pennsylvania. We also partner with the International CDKL5 Disorder Database, Connect CDKL5, and the CDKL5 Alliance.

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