About This Resource
About Us — Our Mission
A Race Against Blindness funds sight-saving research for children with inherited retinal diseases. Learn about our mission and impact.
A free research hub dedicated to advancing understanding of inherited retinal diseases, provided by A Race Against Blindness.
A Race Against Blindness
A Race Against Blindness is a 501(c)(3) nonprofit organization funding sight-saving clinical trials to treat childhood blindness. Our current mission: fundraising for a new gene therapy for RP/BBS1 — a rare but devastating cause of childhood blindness.
This IRD resource hub is one of the ways we serve the inherited retinal disease community — providing free, comprehensive research information to patients, families, and researchers navigating the complex landscape of IRDs.
What This Resource Offers
35 Disease Profiles
Comprehensive profiles covering genetics, symptoms, treatments, and prognosis for every major inherited retinal condition.
85 Gene Profiles
Detailed information on every gene associated with IRDs, including function, chromosome location, and inheritance patterns.
Clinical Trial Tracking
Monitoring of active clinical trials sourced from ClinicalTrials.gov, covering gene therapy and emerging treatments.
Research Updates
Regular scans of PubMed for new publications, providing accessible summaries of the latest findings in IRD research.
Patient-Friendly Content
Dense scientific papers translated into clear, readable articles for patients and families while maintaining medical accuracy.
For Everyone
Designed to serve patients seeking answers, families supporting loved ones, and researchers exploring the IRD landscape.
How It Works
This resource integrates with two primary data sources to keep its content current:
PubMed: We perform regular searches across PubMed's database of biomedical literature, identifying new publications related to any of the 35 IRD conditions covered on our platform.
ClinicalTrials.gov: We monitor ClinicalTrials.gov for new and updated clinical trials targeting inherited retinal diseases, ensuring our trial database reflects the latest opportunities for patients.
When new research or trials are discovered, comprehensive and readable articles are reviewed and published to the Research Blog. This ensures that the IRD community has access to the latest developments without needing to parse dense scientific literature.
Support Our Work
This resource is provided completely free of charge by A Race Against Blindness. If you find it valuable, please consider supporting our nonprofit's mission to fund sight-saving clinical trials for children with inherited retinal diseases.
Our Commitment
We are committed to providing accurate, unbiased, and accessible information about inherited retinal diseases. All medical information is grounded in peer-reviewed research and established clinical guidelines. We encourage all visitors to consult with qualified healthcare professionals for personalized medical advice.