Additional Information & Support Organizations
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.
LCA-Specific Organizations
The Foundation American Society of Retina Specialists
Gene: LCA9 (NMNAT1)
Gavin R. Stevens Foundation
Gene: LCA8 (CRB1)
Grupo CRB1 España y Latinoamérica
Gene: LCA8 (CRB1)
Curing Retinal Blindness Foundation
Gene: LCA13 (RDH12)
The RDH12 Fund for Sight
LCA Facebook Groups and Pages
Social media can be an excellent tool for sharing information and connecting with other families. Many people find comfort, information, and friendship through these online communities.
A note of caution: Please be mindful of your privacy when engaging online — avoid sharing too much personal information in public or group settings.
- Seeing A Cure For Blindness (Hope in Focus closed group)
- AIPL1 Community
- CRB1 Network
- LCA SUPPORT
- LCA10 – CEP290
- LCA2 – RPE65 Families
- Parents of RDH12 Kids
- RDH12 Fund for Sight
- RPGRIP1 Family Group (LCA)
- The GUCY2D Project
- LCA8 – CRB1
- LCA – NMNAT1 Project Research for Sight
- LCA7 – CRX
- Candle in the Dark
If you know of a Facebook group or page that we have missed, please let us know at info@hopeinfocus.org.
Rare Disease Organizations
These are organizations that provide support and advocate for the rare disease community.
- National Organization for Rare Diseases (NORD)
- Global Genes
- Genetic and Rare Diseases (GARD) Information Center
IRD Organizations
These organizations support the development of treatments and cures, and provide patient education and support for various eye diseases.
- Foundation Fighting Blindness
- Fighting Blindness Canada
- Retina International
- Choroideremia – Choroideremia Foundation
- Retina UK
- Stargardt’s Disease
- Usher Syndrome
- RetNet The Retinal Information Network
- NIH/National Eye Institute
- RP HopeSave Sight Now (Usher syndrome)
Blindness Advocacy Groups
These organizations provide a wide range of support for people with visual impairments.
- American Council of the Blind
- American Foundation for the Blind
- Carroll Center for the Blind
- Pediatric Retinal Research Foundation
- Prevent Blindness
- Lighthouse Guild
- National Federation of the Blind
- Wonderbaby
- Wonderbaby – Resources for parents and caregivers of visually impaired children
Genetic Counseling (U.S.)
A genetic counselor can help interpret test results and provide guidance for your family. These organizations can help you find a certified professional: