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
The Foundation is committed to supporting the next generation of retina leaders—those who will drive groundbreaking research, sustain a culture of innovation, and improve outcomes for millions of patients worldwide.
Through programs supporting education, research and innovation, we are shaping the future of retina care and ensuring continued progress in preventing blindness.
Grupo CRB1 España y Latinoamérica
Gene: LCA8 (CRB1)
Grupo CRB1 España y Latinoamérica is a patient advocacy group that supports individuals and families affected by CRB1-related inherited retinal diseases across Spain and Latin America.
Curing Retinal Blindness Foundation
Gene: LCA9 (NMNAT1)
Curing Retinal Blindness Foundation is a patient advocacy organization dedicated to funding research for CRB1-related inherited retinal diseases and supporting families raising blind or visually impaired children. The foundation connects patients and caregivers with educational resources, community support, and research initiatives focused on developing treatments for rare genetic eye diseases such as Leber Congenital Amaurosis, Retinitis Pigmentosa, and cone-rod dystrophy caused by CRB1 gene mutations.
Gavin R. Stevens Foundation
Gene: LCA9 (NMNAT1)
Gavin R. Stevens Foundation is a nonprofit organization dedicated to raising awareness and funding research for Leber Congenital Amaurosis (LCA) and other rare inherited retinal diseases. Founded by the parents of Gavin Stevens, the organization supports research, education, and advocacy efforts aimed at advancing treatments and finding a cure for blindness caused by genetic retinal conditions.
The RDH12 Fund for Sight (USA)
Gene: LCA13 (RDH12)
RDH12 Fund for Sight is a nonprofit organization dedicated to funding research and advancing treatments for RDH12-associated Leber Congenital Amaurosis (RDH12-LCA). Operated entirely by volunteers, the foundation directs all donations toward RDH12-focused research initiatives and fundraising efforts aimed at finding a cure for this rare genetic retinal disease.
Eyes on the Future (UK)
Gene: LCA13 (RDH12)
Eyes On The Future, formerly known as Through Vicky’s Eyes, is a nonprofit organization dedicated to raising awareness and funding research for rare inherited retinal diseases, particularly RDH12-related Leber Congenital Amaurosis (LCA). Founded by the parents of Vicky following her diagnosis, the organization supports research initiatives, global patient collaboration, and advocacy efforts aimed at advancing treatments and improving outcomes for families affected by inherited retinal diseases.
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
- LCA13 (RDH12) 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 Hope (Usher syndrome)
- Save 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: