About Us

Hope is in our DNA! 

CDKL5 is a genetic disorder that causes uncontrollable seizures from infancy, severe developmental delays and intellectual disability amongst many other symptoms.

We hope to narrate many brave stories of the families that are going through this difficult journey, steadily. This page is here not just to enlighten you about the causes and symptoms of CDKL5, but also to show how even the tiniest signs of improvement bring an abundance of joy to our community.  

Here is the story of Reyna and her family's CDKL5 journey 

Rarebase is on the hunt for therapeutic opportunities (illumina.com). 

CDKL5 is a rare genetic disorder that primarily affects girls. It is caused by mutations in the CDKL5 gene and is characterized by early-onset seizures, developmental delay, and severe neuro-developmental impairment. Unfortunately, there is currently no cure for this condition, and treatment options are limited.

To address this critical unmet need, we have established a CDKL5 South Asia (working jointly with our global community CDKL5 Alliance, and it's members like  CDKL5USA, The LouLou Foundation, and more). Our goal is to bring together patients, families, and caregivers to exchange information, share experiences, and collaborate in the search for better treatments and a cure. Also, to raise awareness of the condition amongst the medical, scientific and pharmaceutical communities, whilst ultimately supporting our children and families.