All of our guides, in one place
Vision and eye anatomy
From the cornea to the visual cortex, and where the retina fits.
Vision loss simulations
Approximations of tunnel vision, central loss and night blindness.
Understanding blindness
Blindness as a spectrum, legal definitions, cane colors and your rights.
Newly diagnosed
Five steps in order, plus a patient and parent guide for every condition.
Genetic testing guide
What a test can tell you, how to get one, and how to read the result.
Children and families
School accommodations, development and support for parents.
Therapy guide
Gene replacement, gene editing, optogenetics, cell therapy and drugs, in plain words.
How clinical trials work
Phases, eligibility, consent and the questions to ask.
Treatment pipeline
Therapies in development by approach and stage, with an as-of date.
Living with low vision
Lighting, contrast, mobility, benefits and daily strategies.
Assistive technology setup
Step-by-step guides for VoiceOver, NVDA, ZoomText and more.
State blind services
Your state agency, what it provides, and what happens after you apply.
Find a specialist
Physicians and centers with inherited retinal disease expertise.
BBS Conference 2026 archive
Talks and podcasts from the Bardet-Biedl Syndrome Foundation conference.
Understanding your vision
After a diagnosis
Treatments and research
Living well with vision loss
We just got a diagnosis
A calm five-step path, with guides for your condition.
We have a gene name and want to know what's next
Genetic testing, therapy approaches and how trials work.
I'm raising a child with an IRD
School, support and everyday life for parents.
Education Guides for Inherited Retinal Disease
Free plain-language guides for families facing inherited retinal disease, in four legs: understanding your vision, the first weeks after a diagnosis, treatments and research, and living well with vision loss.
Condition profiles
Symptoms, inheritance, genes, treatment status
Gene profiles
Function, conditions, research and trials
Open clinical trials
Live from ClinicalTrials.gov, searchable by condition or gene
Education Hub › Learn
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.
Start here if…
The course, leg by leg
Read in order or jump to the leg you're on. Every guide stands on its own.
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What does it look like? Each condition from the inside, in patients' own words, with the simulator frames and sources. {ARTICLE_ROUTES.map((a) => (
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.
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