Get Tested, Get Connected

At Sofia Sees Hope, 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 info@sofiaseeshope.org 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

Sofia Sees Hope 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.

Gene: LCA9 (NMNAT1)
Gavin R. Stevens Foundation

Gene: LCA9 (NMNAT1)
Research for Sight

Gene: LCA8 (CRB1)
Curing Retinal Blindness Foundation

Gene: LCA13 (RDH12)
The RDH12 Fund for Sight

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 info@sofiaseeshope.org

We See A Cure For Blindness (Sofia Sees Hope closed group)

LCA SUPPORT

LCA10 – CEP290

LCA2 – RPE65 Families

Parents of RDH12 Kids

RDH12 Fund for Sight

The GUCY2D Project

LCA8 – CRB1

LCA – NMNAT1 Project Research for Sight

LCA7 – CRX

Candle in the Dark (UK-based LCA advocacy)