OUR IDENTITY
We are the parents of a boy from Cyprus, who was diagnosed with Leber Congenital Amaurosis (LCA) in November 2022, at the age of six. This is a rare ocular disease caused by an RDH12 gene mutation leading to significant vision impairment.
During the recent period, we noticed some difficulties in our child’s daily life, such as in board games, distinguishing details in drawings and colors, as well as recognizing faces from a distance. Therefore, we visited three ophthalmologists in Cyprus.
OUR MISSION
The purpose of this organization is twofold. Firstly, it aims to provide information and support to individuals who suffer from the rare genetic disorder known as Leber Congenital Amaurosis (LCA) due to a mutation in the RDH12 gene. Secondly, it seeks to educate and raise awareness among the general public about this condition.
We strive to create an environment of hope and autonomy for patients, equipping them with the necessary tools and resources to address the challenges they currently face or may encounter in the near future.
Furthermore, on a practical level, the organization aims to raise funds to initiate clinical studies for the treatment of Leber Congenital Amaurosis (LCA) attributed to the RDH12 gene.
The Foundation will undertake various initiatives to support research, medical care, education, and information dissemination, as well as to provide assistance to individuals with RDH12 and their families.
Our dream is to discover the appropriate treatment that will combat the disease or at least slow down its progression. We believe that this can become a reality with the contributions of all, including patients, scientists, and the general public.
Let’s contribute, so new bright horizons will open and lead sight beyond limits..!!