• To help connect 20,000 people worldwide affected with LCA6/RPGRIP1 mutation. The goal is to be able to work together as a community, so that we can raise awareness on this rare disease. The goal is to be able to develop a master database of RPGRIP1 individuals and families. Please contact us via: info.rpgrip1@gmail.com


  • To facilitate fundraising efforts, and to obtain donations from individuals, foundations, and/or companies. We are asking for your help because sight-saving treatment is put on hold until funding is obtained. The need is urgent. As a short term goal, we are seeking $950,000 so that Odylia Therapeutics can begin manufacturing a drug treatment for RPGRIP1 as soon as possible. 100% of any donations are tax deductible, will go directly to the Odylia RPGRIP1 gene therapy program, and will help fund the manufacturing costs. The entire project is estimated to cost $3.9 to $4.3 million dollars. If Odylia were to have the full funding needed, clinical trials could begin as early as 2023. We need your help today!