CDKL5 Georgia – this is parent’s organization that has united 5 families with 5 amazing children, 1 boy and 4 girls.
Our organization was established in January 2019, and since that day, we have hope for our children’s future. We found, empowered and learned so much from each other. Before finding each other we all had to deal with so much problems alone.
But today we are optimistic. We are together and together we know more than alone.
We are better informed and know more details about our disease, treatment plans, clinical trials. We are becoming stronger, we are trying to raise awareness of the disorder in our country, to provide patients with access to various services or programs. We are with amazing doctors – Dr. Gia Melikishvili and his team.
Our goal is to raise awareness of CDKL5 deficiency disease and promoting a greater understanding in Georgia. Providing patients with access to various services, medical supplies or programs. Communication with different international organizations and share their experiences.