CDKL5 organizations worldwide 

• Learn more

​​

• Global Genes

• National Organization for Rare Disorders (NORD)

• Eurordis (Rare Diseases Europe)

• Canadian Organization for Rare Disorders (CORD)

• University of Pennsylvania Orphan Disease Center

• Rare Voices Australia (RVA)

Rare Disease Organizations 

Epilepsy Resources

• American Epilepsy Society (AES)

• Child Neurology Foundation

• Citizens United for Research in Epilepsy (CURE)

• Epilepsy Foundation

• FACES: Finding a Cure for Epilepsy and Seizures 

• Lennox-Gastaut Syndrome Foundation

Research Institutions and Clinical Trials

• Genetic and Rare Diseases Information Center (GARD)

• NIH/Clinical Trials (clinicaltrials.gov)

• National Institutes of Health (NIH)

• National Institute of Neurological Disorders and Stroke (NINDS)

• National Center for Advancing Translational Sciences (NCATS)

• Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)