All of our guides, in one place
Fourteen plain-language guides and directories, written for families, in the order the race usually runs: understanding vision, the first weeks after a diagnosis, treatments and research, and living well every day. All of it is free.
The course, leg by leg
Read in order or jump to the leg you're on. Every guide stands on its own.
Understanding your vision
- Vision and eye anatomyFrom the cornea to the visual cortex, and where the retina fits.
- Vision loss simulationsApproximations of tunnel vision, central loss and night blindness.
- What does it look like?Each condition from the inside, in patients' own words, with the simulator frames and sources.
- What does night blindness look like?
- What does retinitis pigmentosa look like?
- What does Stargardt disease look like?
- What does choroideremia look like?
- What does cone dystrophy look like?
- What does achromatopsia look like?
- What does Best disease look like?
- What does Usher syndrome look like?
- What does Leber congenital amaurosis look like?
- What does vision loss look like in Bardet-Biedl syndrome?
- Understanding blindnessBlindness as a spectrum, legal definitions, cane colors and your rights.
Living well with vision loss
- Living with low visionLighting, contrast, mobility, benefits and daily strategies.
- Assistive technology setupStep-by-step guides for VoiceOver, NVDA, ZoomText and more.
- State blind servicesYour state agency, what it provides, and what happens after you apply.
- Find a specialistPhysicians and centers with inherited retinal disease expertise.
- BBS Conference 2026 archiveTalks and podcasts from the Bardet-Biedl Syndrome Foundation conference.
The database behind the guides
Every guide links into the same reference: condition profiles, gene profiles and a live search of clinical trials. Researchers and clinicians usually start here.
- Condition profilesSymptoms, inheritance, genes, treatment status52
- Gene profilesFunction, conditions, research and trials125
- Open clinical trialsLive from ClinicalTrials.gov, searchable by condition or gene261
Medical Disclaimer
This information is for educational purposes only and does not constitute medical advice. It is not a substitute for seeking medical opinions, nor an endorsement of any treatments, research, or organizations. Trial information is sourced from ClinicalTrials.gov and public press releases. Genetic testing and clinical management should be performed by qualified healthcare professionals, including ophthalmologists and genetic counselors.