CDKL5 Canada

CDKL5 Canada provides support and resources to families affected by CDKL5-related epilepsy, a rare genetic disorder that causes severe seizures and developmental delays, primarily in infants and young children. The organization funds research to advance understanding of the condition and improve treatment options while connecting families in Toronto and across Canada with medical expertise, educational materials, and peer support networks. CDKL5 Canada also advocates for better access to care and works to raise awareness among healthcare providers about this little-known but serious neurological condition. By bringing together researchers, clinicians, and families, the organization accelerates progress toward better outcomes for children living with CDKL5-related epilepsy and supports parents navigating the complex medical and emotional challenges that come with a rare disease diagnosis.