Get Tested, Get Connected

At Hope in Focus, we like to say “get tested, get connected.” A diagnosis of LCA will bring lots of questions, and learning your specific gene mutation will raise even more. The Internet can provide information, and connections to people who are on a journey similar to yours. If you know of an organization we have missed, please email us at and let us know.

Also learn about our Family Connections program, in which we connect you directly with someone else who has the same genetic diagnosis.

Organizations & Support Groups

Hope in Focus includes families with any genetic mutation, as well as those who have not yet received a genetic diagnosis. Once you do have a genetic diagnosis, these are some of the single-gene organizations with which you may want to connect.

Through Vicky’s Eyes

Drew’s Beacon for Blindness

Gene: LCA9 (NMNAT1)
Gavin R. Stevens Foundation

Gene: LCA9 (NMNAT1)
Research for Sight

Gene: LCA8 (CRB1)
Grupo CRB1 España y Latinoamérica

Gene: LCA8 (CRB1)
Curing Retinal Blindness Foundation

Gene: LCA13 (RDH12)
The RDH12 Fund for Sight

Gene: LCA6 (RPGRIP1)

LCA Facebook Groups and Pages

Social media can be a wonderful tool to connect with other families and share information. It is important to remember to never give out too much personal information on a social media site or in a group, as there are always people looking to exploit a personal situation. If you know of a Facebook group or page that we have missed, please let us know at

Seeing A Cure For Blindness (Hope in Focus closed group)

AIPL1 Community

CRB1 Network


LCA10 – CEP290

LCA2 – RPE65 Families

Parents of RDH12 Kids

RDH12 Fund for Sight

The GUCY2D Project


LCA – NMNAT1 Project Research for Sight


Candle in the Dark

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