Connect With Other Families

Having a rare disease means you probably don’t know anyone else with LCA. In fact, you may not even know many blind people or especially young blind children. We know, it can feel incredibly isolating. But don’t despair! Here is a list of other LCA and IRD support groups.

If you’re connecting on Facebook, many of these groups are closed. This means you will need to ask permission to join. It usually takes no more than a day or two at the very most, and is done to protect the privacy of its participants.

By the way, we’re a very small team and want to make to keep this list relevant and up to date, so if you have links to suggest, let us know!

LCA Groups

  • LCA support – A closed group for LCA families to ask questions and seek advice.
  • WonderBabyFacebook page and website – managed by Perkins School for the Blind and run by Amber, a blogger and LCA Mom extraordinaire, this facebook page and website is a wealth of information resources for parents of blind children, LCA and IRD updates
  • LCA Hope Alliance – provides general advocacy event updates and discussion. This is an open page.

LCA by Gene

If you have a diagnosis, you may also connect with a group of families that have the same gene. Not all genes have a group or may only have a small group of families, so do make sure to also stay connected with the LCA groups above. While we totally get why you may want to connect directly with your gene group, as one rare disease group together we are stronger!

Gene Group
NMNAT1 Gavin R. Stevens Foundation
CRB1 Cure CRB1
RDH12 RDH12 Fund for Sight

Other rare inherited retinal disease groups

Choroideremia – Choroideremia Foundation

Usher Syndrome – Usher Syndrome Coalition

Retinitis Pigmentosa

RP Fighting Blindness, a UK organization

RP International

Other retinal disease groups and resources

Foundation Fighting Blindness

Lighthouse Guild

Prevent Blindness

Research to Prevent Blindness

Retina International


Looking for more or different kinds of resources? Check out the Wonderbaby resource links page – they maintain a directory of all kinds of resources from Braille education to parenting to magazines and newsletters for the blind and more!

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Connect with Another LCA Parent

If you would like to speak to another LCA parent, we will try to connect you!