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 info@hopeinfocus.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
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.
Gene: LCA-CRX
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)
LEBER CONGENITAL AMAUROSIS – 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 info@hopeinfocus.org
Seeing A Cure For Blindness (Hope in Focus closed group)
Rare Disease Organizations
These are organizations that provide support and advocate for the rare disease community.
IRD Organizations
These organizations support treatments and cures, and provide patient education and support for various eye diseases.
Foundation Fighting Blindness (Canada)
Choroideremia – Choroideremia Foundation
RP Fighting Blindness (UK organization)
Retinitis Pigmentosa International
RetNet The Retinal Information Network
Save Sight Now ( Usher syndrome)
Blindness Advocacy Groups
These are organizations that provide a wide range of support for those with visual impairments.
American Foundation for the Blind
Association for Retinopathy of Prematurity and Related Diseases
National Association for Parents of Children with Visual Impairments (NAPVI)
National Federation of the Blind
Wonderbaby resources for parents and caregivers of visually impaired children