About CDKL5 South Asia
CDKL5 South Asia is a parents-led initiative dedicated to supporting children and families affected by CDKL5 Deficiency Disorder across South Asia through awareness, advocacy, and access to research.
Our Mission
Our mission is to build awareness about CDKL5 Deficiency Disorder, empower families with reliable information, and advocate for better diagnosis, care, and research opportunities for affected children.
We work closely with caregivers, clinicians, researchers, and advocacy groups to strengthen the CDKL5 ecosystem in South Asia and connect families to global efforts.
Inspiration & Community Voice
CDKL5 South Asia is inspired by the lived experiences of children and families affected by CDKL5 Deficiency Disorder across South Asia. Their journeys shape our advocacy, awareness efforts, and commitment to improving care and access to research.
We share parent stories to amplify community voices, foster connection, and ensure families know they are not alone.
Parent & Advocacy Volunteers
Mr. Sumit Pokhariyal
Mr. Gokul Krishnan
Mr. Mohan SM
Father of Sharvi
Board of Directors
- Mr. Surendra Mehta
- Dr. Vivek Jogani
Medical Advisors
Our work is guided and supported by experienced clinicians who provide medical insight and advisory support to advance care and research for children affected by CDKL5.