Organizations Funding
IRD Research
A comprehensive directory of nonprofit foundations, patient coalitions, and research funds driving progress toward treatments and cures for inherited retinal diseases — from large umbrella organizations to disease-specific advocacy groups.
Showing 20 of 20 organizations
Foundation Fighting Blindness
The world's leading funder of IRD research since 1971.
Founded in 1971 by families determined to find cures for inherited retinal diseases, the Foundation Fighting Blindness (FFB) is the world's largest private funder of retinal disease research. FFB funds a broad portfolio spanning gene therapy, gene editing, neuroprotection, and optogenetics across all IRDs.
- Raised more than $954 million toward its mission of preventing, treating, and curing blinding retinal diseases.
- Funded the foundational research that led to LUXTURNA™ (voretigene neparvovec), the first FDA-approved gene therapy for any inherited disease (December 2017).
- FY2024: Awarded 35 new research grants totaling $19.8 million.
- FY2025: Funded 16 new projects totaling more than $9 million.
- Since 2005: 440+ grants to 227 researchers, resulting in more than 12,000 published scientific papers.
- Operates the My Retina Tracker® genetic testing registry connecting patients to research.
- Leads the Clinical Consortium — a nonprofit alliance of retinal specialists accelerating IRD clinical trials.
Retinal Degeneration Fund (RD Fund)
Bridging nonprofit research and commercial IRD therapy development.
The Retinal Degeneration Fund (RD Fund) is the investment arm of the Foundation Fighting Blindness, launched in 2018. It makes mission-related investments in companies with IRD projects nearing clinical testing, accelerating the path from laboratory discovery to human trials by attracting larger biotech and pharma investment.
- Deployed $86 million across 17 companies since its inception in 2018.
- Portfolio includes Atsena Therapeutics (developing AAV gene therapies for LCA1 and X-linked retinoschisis).
- Launched Opus Genetics in 2021 to develop IRD gene therapies; Opus was acquired by Ocuphire Pharma in 2024.
- Demonstrates early proof-of-concept for emerging therapies to catalyze larger commercial investment.
Research to Prevent Blindness (RPB)
The leading nonprofit supporting all forms of eye disease research.
Founded in 1960, Research to Prevent Blindness (RPB) is the leading nonprofit funder of research directed at the prevention, treatment, and eradication of all blinding eye diseases. RPB provides unrestricted grants to ophthalmology departments at U.S. medical schools, enabling investigators to pursue high-risk, high-reward research.
- Surpassed $400 million in total research funding, a milestone reached in 2024.
- RPB-funded researchers delivered the first FDA-approved gene therapy for inherited blindness (2018).
- Associated with nearly every major breakthrough in vision science over the past 65 years.
- Provides unrestricted grants to ophthalmology departments at leading U.S. medical schools.
- Celebrates 65 years of continuous support for vision science (2025).
A Race Against Blindness
Funding sight-saving clinical trials to treat childhood blindness.
A Race Against Blindness is a family-founded Arizona-based nonprofit created by the parents of Luke, a child diagnosed with Bardet-Biedl Syndrome 1 (BBS1) who faces progressive vision loss. The organization focuses specifically on funding clinical trials for retinitis pigmentosa caused by BBS1, using innovative fundraising models (vehicle giveaways) to channel private donations directly into gene therapy development.
- Awarded $3 million in total grants to Axovia Therapeutics in 2024 to advance AXV-101, a gene therapy for BBS1-related RP.
- Awarded an additional $1 million grant in September 2025 to advance the BBS1 clinical trial.
- Awarded a further $1.1 million grant in January 2026 to ensure AXV-101 advances into clinical trial.
- Featured on Good Morning America, bringing national attention to pediatric IRD research funding.
- Pioneering a creative fundraising model that directly connects donor dollars to clinical trial milestones.
Choroideremia Research Foundation (CRF)
The world's largest organization dedicated to curing choroideremia.
The Choroideremia Research Foundation (CRF) is the largest organization in the world focused exclusively on finding a cure for choroideremia (CHM), a rare X-linked degenerative retinal disease. Over 25 years, CRF has built a global network of researchers and patients, funded over 100 grants, and recently acquired gene therapy assets from Spark Therapeutics.
- Provided more than $6 million for over 100 research grants across 25+ years.
- Funded development of the CHM animal model, enabling preclinical gene therapy research.
- Funded pre-clinical production of gene therapy vectors currently in or approaching clinical trials.
- Acquired Spark Therapeutics' SPK-7001 CHM gene therapy assets (2025–2026) and is analyzing long-term clinical data.
- June 2025: Awarded six new global grants spanning AI-assisted research, gene editing, and novel therapeutic approaches.
Usher Syndrome Coalition
The most comprehensive resource for the global Usher syndrome community.
The Usher Syndrome Coalition is the leading global organization bridging the gap between researchers and families affected by Usher syndrome — the most common cause of combined deaf-blindness. The Coalition connects patients to clinical trials, advocates for increased NIH/NEI funding, and maintains a comprehensive research and resource network.
- Maintains the most comprehensive global resource database for Usher syndrome patients, families, and researchers.
- Advocates for increased NIH and NEI funding specifically for Usher syndrome vision loss research.
- Maintains an up-to-date clinical trial registry for Usher syndrome patients seeking to participate in research.
- Grounded in Science program links patients directly to researchers, accelerating study enrollment.
Usher Syndrome Society
Raising awareness and research funds for every type of Usher syndrome.
The Usher Syndrome Society is a 501(c)(3) nonprofit whose mission is to raise public awareness and research funds for all types of Usher syndrome. The Society funds targeted research and collaborates with the Foundation Fighting Blindness and other organizations to accelerate treatment development for USH2A and other Usher subtypes.
- Funded research making important progress toward a new treatment for Usher syndrome type 2A (USH2A).
- Raises public awareness for all Usher syndrome types (1, 2, and 3).
- Collaborates with FFB and the Usher Syndrome Coalition on joint research initiatives.
Usher 1F Collaborative
Funding research to save or restore vision in Usher syndrome type 1F.
The Usher 1F Collaborative is a 501(c)(3) nonprofit founded in 2013 by the Chaikof family in partnership with Harvard Medical School. Its mission is to fund medical research to identify an effective treatment to save or restore vision in people with Usher syndrome type 1F (caused by mutations in the PCDH15 gene).
- Secured more than $14 million in total funding for Usher 1F research.
- Funded $5 million in research at 8 laboratories across the U.S. and Australia since inception (as of 2021).
- FY2023: Awarded 4 grants totaling $427,500.
- Established zebrafish and mouse models for USH1F, enabling preclinical therapeutic testing.
- Partnered with the Foundation Fighting Blindness for the RUSH1F natural history study.
Bardet-Biedl Syndrome Foundation
Improving the lives of individuals and families affected by BBS.
The Bardet-Biedl Syndrome Foundation (BBSF) is a nonprofit organization incorporated in 2013 dedicated to improving the lives of individuals and families affected by BBS. The Foundation funds research, supports patients, and advocates for BBS awareness and treatment development.
- Raised more than $1,230,000 for BBS research, treatment, and care.
- 2024: Awarded an $800,000 grant over five years from the Chan Zuckerberg Initiative's Rare As One program.
- Connects BBS families with researchers and clinical trial opportunities.
- Advocates for BBS awareness and improved diagnostic pathways.
American Macular Degeneration Foundation (AMDF)
Prevention, treatment, and cure of macular degeneration and Stargardt disease.
The American Macular Degeneration Foundation (AMDF) is a 501(c)(3) nonprofit committed to the prevention, treatment, and cure of both age-related macular degeneration (AMD) and Stargardt disease — the juvenile form of macular degeneration. AMDF funds research grants and provides extensive patient education resources.
- Supports research leading to prevention and a cure for both AMD and Stargardt disease.
- Provides comprehensive patient education resources specifically for Stargardt disease.
- Funds grants for macular degeneration research including ABCA4-related Stargardt.
BrightFocus Foundation
Accelerating research to defeat macular degeneration, Alzheimer's, and glaucoma.
BrightFocus Foundation is a leading nonprofit funder of research to defeat Alzheimer's disease, macular degeneration, and glaucoma. Its Macular Degeneration Research program funds studies relevant to Stargardt disease and other inherited macular dystrophies, including Best disease.
- Awarded nearly $53 million in scientific grants for macular degeneration research.
- Funds research relevant to Stargardt disease (juvenile macular degeneration) and Best disease.
- Provides expert-vetted patient resources for Best disease and macular conditions.
Achromatopsia Network
Information and community for individuals and families affected by achromatopsia.
The Achromatopsia Network is a nonprofit organization providing information, community, and advocacy for individuals and families affected by congenital, inherited achromatopsia. The Network connects patients to researchers, clinical trials, and the latest developments in ACHM gene therapy.
- Serves as the primary information hub for the global achromatopsia community.
- Connects ACHM patients to gene therapy clinical trials (CNGA3, CNGB3 targets).
- Facilitates patient-researcher connections to accelerate ACHM treatment development.
Achroma Corp
Directly funding research to find a cure for achromatopsia.
Achroma Corp is a nonprofit founded in 2012 by John and Bridget Vissari, parents of a child with achromatopsia. The organization's mission is to raise money and awareness to directly fund research expediting a cure for ACHM, with a focus on gene therapy approaches targeting CNGA3 and CNGB3 mutations.
- Provided $397,144+ in direct research grants since 2012.
- Supports gene therapy research for both CNGA3 and CNGB3 forms of achromatopsia.
- Family-founded organization with a direct path from donations to research funding.
Retina International
A patient-led global umbrella NGO for retinal disease communities worldwide.
Retina International (RI) is a patient-led, global umbrella NGO representing 34+ national patient societies focused on research and support for rare and common retinal diseases. RI facilitates international research collaboration, advocates for patient access to treatments globally, and connects the worldwide IRD community.
- Represents 34+ national patient societies across all continents.
- Facilitates international collaboration between researchers, clinicians, and patient advocates.
- Advocates for global patient access to approved IRD treatments including gene therapies.
- Supports natural history studies and patient registries across member countries.
Prevent Blindness
The nation's leading volunteer eye health and safety organization since 1908.
Founded in 1908, Prevent Blindness is the nation's leading volunteer eye health and safety organization dedicated to fighting blindness and saving sight. The organization provides patient education resources for inherited retinal diseases including Stargardt disease, and advocates for vision health policy at the national level.
- Over 115 years of continuous service to eye health and vision safety in the United States.
- Provides free patient education resources for Stargardt disease (2024 resource expansion).
- Advocates for vision health policy and increased research funding at the federal level.
- Maintains a shared vision resource directory for IRD patients and families.
Hearing Health Foundation (HHF)
Funding research for hearing loss and Usher syndrome through the ERG program.
The Hearing Health Foundation (HHF) funds research into hearing loss and Usher syndrome through its Emerging Research Grants (ERG) program. Because Usher syndrome causes both hearing loss and progressive vision loss (retinitis pigmentosa), HHF's grants directly support research into the combined sensory impairment of Usher syndrome.
- Emerging Research Grants (ERG) program awards annual grants to researchers studying Usher syndrome etiology, diagnosis, and treatment.
- Funds research into the dual sensory impairment (hearing + vision) of Usher syndrome.
- Supports early-career researchers entering the Usher syndrome field.
Fighting Blindness Canada
Leading the fight against blindness by funding IRD research in Canada.
Fighting Blindness Canada leads the fight against blindness by raising and directing funds to accelerate the development and availability of treatments and cures for all forms of inherited retinal disease in Canada. The organization partners with the Foundation Fighting Blindness on international research initiatives.
- Primary funder of IRD research in Canada, supporting researchers at Canadian institutions.
- Partners with the Foundation Fighting Blindness on international research programs.
- Advocates for Canadian patient access to approved IRD therapies.
Retina UK
Funding research and supporting people affected by inherited sight loss in the UK.
Retina UK (formerly RP Fighting Blindness) is a UK charity providing information, support, and research funding for people affected by all forms of inherited sight loss. The organization funds medical research to accelerate the search for treatments and advocates for IRD patient access within the NHS.
- Funds medical research into all forms of inherited retinal disease in the UK.
- Provides information and support services for UK patients and families affected by IRDs.
- Advocates for NHS access to approved gene therapies and IRD treatments.
Fighting Blindness Ireland
Driving IRD research and supporting patients in Ireland.
Fighting Blindness Ireland is Ireland's leading organization funding research into inherited retinal diseases and supporting Irish patients and families. The organization funds early-career researchers, supports the Target 5000 national genetic testing program, and advocates for patient access to treatments.
- Funded Target 5000 — Ireland's national IRD genetic testing and natural history program.
- Target 5000 team won the Royal Academy of Medicine in Ireland award for Best Scientific Paper in Ophthalmology (2021).
- Career Development Awards program (launched 2022) supporting PhD students and early-career IRD researchers.
Stargardt Foundation
Uniting the Stargardt community to accelerate research and treatment development.
The Stargardt Foundation groups and federates people with Stargardt disease internationally to dynamize medical research and facilitate the development of new treatments for ABCA4-related Stargardt disease. The Foundation maintains an international patient community and supports research collaboration.
- Groups and federates Stargardt patients internationally to accelerate research.
- Facilitates development of new treatments for ABCA4-related Stargardt disease.
- Maintains an international patient community and supports research collaboration.
This directory is provided for informational purposes. ClearSight is not affiliated with any of the organizations listed. Achievement figures are sourced from publicly available organizational reports and press releases. If you represent an organization that should be included or if information needs updating, please contact us.