If you are someone diagnosed with LCA/RPGRIP1, please reach out, as I am diligently working to compile a master database of people affected by this specific genetic mutation. Also, if you would like more information on ways you can help, please send me an email and I will try my best to respond back to you within 24 hours.
There is a private Facebook page for LCA RPGRIP1 Individuals and family members. Under the Facebook search feature, you can search for the group name:
RPGRIP1 Family Group (LCA)
If you would like more information on how to join the group, please email me and I am happy to help.
-Melissa M., LCA/RPGRIP1 parent