Newly Diagnosed with CDKL5?

You are not alone. CDKL5 South Asia is here to support families with guidance, trusted information, and community connection.

If your child has recently been diagnosed with CDKL5 Deficiency Disorder, registering with us helps ensure you receive:

Trusted information and research updates
Guidance on care pathways and support options
Connections with other CDKL5 families
Updates on clinical research and trials in India

Registration is optional, and all shared information is handled with care and confidentiality.

Join Parent WhatsApp Support Group →

You may leave the group at any time.

Register Diagnosed Child

Please complete the information below. Our support team will review your submission and contact you as soon as possible.

Parent Details

Child Details

Child Name *

Child Date of Birth *

Diagnosis Date *

Current Hospital / Neurologist

Location

Additional Information

Please share seizure history, current medications, therapies, or any support you are currently looking for.

Your information will be kept strictly confidential and will only be used by the CDKL5 South Asia Foundation to provide support, communicate important updates, and connect families with relevant resources. We do not share personal information without your consent.

I confirm that the information provided is accurate to the best of my knowledge and I consent to CDKL5 South Asia Foundation contacting me regarding support, Clinical trial updates, and community resources.

By submitting this form you confirm that the information provided is accurate to the best of your knowledge.