Eye Conditions and Syndromes
Learn about different types of eye conditions or syndromes that may affect young children, such as Cortical Visual Impairment (CVI), Leber's Congenital Amaurosis (LCA), Anophthalmia and Microphthalmia, Optic Nerve Hypoplasia (ONH) and Albinism.
Eye Conditions and Syndromes, iPad Apps and Accessibility
Successful iPad Apps for Children with CVI
A collection of successful iPad apps for kids diagnosed with CVI as recommended by a TVI and CVI specialist.
Eye Conditions and Syndromes, Visual Impairment
Why I laughed when my daughter lost her eye
Gwen tells funny stories about raising her daughter Ivey who has bilateral anophthalmia. Gwen says it's important for us to learn to laugh at ourselves and our lives and teach...
Eye Conditions and Syndromes, Visual Impairment
Leber’s Congenital Amaurosis (LCA) FAQ
All your questions about Leber's Congenital Amaurosis (LCA) are answered here in one place. Don't see your question? Then just send us an email and we'll get right on it!
Eye Conditions and Syndromes, Visual Impairment
How one tiny fish may help us find a cure for blindness
At the University of Michigan Kellogg Eye Center, they are studying the visual system of the zebrafish in hopes of finding cures for blindness.
Eye Conditions and Syndromes
The search for a treatment for LCA10-CEP290
Laura Steinbusch reports on exciting news from ProQR and their trials for a treatment for blindness caused by LCA10-CEP290.
Eye Conditions and Syndromes
How Can I Get My Son To Keep His Glasses On?
A question for our parent community: I need proven techniques used to get a two year old to wear his new glasses. Any suggestions will be greatly appreciated!
Eye Conditions and Syndromes
Saving Vision by Tricking Rods into Thinking They’re Cones?
A different way to think about saving vision in inherited retinal diseases may be to turn rods into cones.
Eye Conditions and Syndromes, Visual Impairment
My child has LCA and presses her eyes. Is this normal? What can we do about it?
If your blind child is pressing or poking their eyes you may be looking for information on why they are doing this and what you can do to help them...
Assistive Technology, Eye Conditions and Syndromes, iPad Apps and Accessibility
The “Big 3 Tool Kit” for Children with CVI: PLUS the 20 Best CVI-Friendly iPad Apps!
Children with CVI often prefer clear, crisp images with little background clutter. They respond well to high contrast, bright colors (especially yellow or red), movement and LIGHTS!
Eye Conditions and Syndromes
Leaving no one ‘LCA patient’ behind: Rare Diseases International policy event
"When you received your, or your child’s, diagnosis you might have felt as if in the desert; alone and no idea which direction is the right one."
Eye Conditions and Syndromes, iPad Apps and Accessibility
Our 20 Favorite iPad Apps for Kids with CVI
The iPad is very interactive and easily tailored to suit the needs of kids with CVI, if you have the right apps. Here are our favorites!
Eye Conditions and Syndromes, Visual Impairment
Top 8 Misconceptions about Cortical Visual Impairment (CVI)
Do you know the facts of Cortical Visual Impairment (CVI)? Here are 8 myths you may have heard that just aren't true!
Eye Conditions and Syndromes, Visual Impairment
ID YOUR IRD Offers Free Genetic Testing for Families with Inherited Retinal Diseases
Spark Therapeutics launches ID YOUR IRD genetic testing info site offering free genetic testing for people with inherited retinal diseases.
Eye Conditions and Syndromes
Update on LCA Treatment and Spark Therapeutics
Spark Therapeutics continues to test their treatment for LCA (RPE-65) and they find that it is safe, efficient and provides long term benefits
Eye Conditions and Syndromes, Visual Impairment
Pediatric Cortical Visual Impairment Society (PCVIS)
The mission of the Pediatric Cortical Visual Impairment Society is to advocate for improvement in the quality of life of children with vision loss due to brain disorder, disease or...
Eye Conditions and Syndromes
The Science Behind an Upcoming Treatment for LCA10/LCA-CEP290
A doctor in the Netherlands is developing a treatment for LCA that could help patients with the CEP290 mutation.
Eye Conditions and Syndromes
New App Helps Patients Manage Care After Strabismus Surgery
A new pilot app from Boston Children's Hospital allows doctors in their Ophthalmology Department to remotely monitor patients after surgery for strabismus.
Eye Conditions and Syndromes
CEP290 in LCA and other Ciliopathies
Mutations in the CEP290 gene are linked to many different ciliopathies (disease of the cilia), like LCA, Joubert Syndrome, Meckel syndrome, Bardet-Biedl syndrome and more.
Eye Conditions and Syndromes
A Shared Vision: Resources for Inherited Retinal Diseases
Spark Therapeutics has launched a new website designed to help patients, caregivers and health care professionals better understand inherited retinal diseases (IRDs) and the importance of genetic testing.
Eye Conditions and Syndromes
New Technology Could Cure Retinitis Pigmentosa (RP)
Gene-editing technology could personalize how we treat eye diseases.
Eye Conditions and Syndromes
My child was just diagnosed with a retinal disorder, are there any treatments? Is there a cure?
Blindness due to a retinal disorder is no longer completely untreatable. There are devices that can restore or augment sight as well as some serious movement in the world of...
Eye Conditions and Syndromes
Regenerating Optic Nerves
Everyone knows you can't regenerate nerves, so if the optic nerve is damaged or underdeveloped there really aren't any options. Or are there?
Eye Conditions and Syndromes
Genetic Testing for Retinal Diseases: Your Questions Answered!
Do you have questions about the genetics behind an inherited retinal disorder? How do you do genetic testing... and what do you do with the test results?
Eye Conditions and Syndromes
Gut Microbes Linked to Blinding Autoimmune Disease
New research shows the autoimmune eye disease could be linked to gut microbes.