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.

Close up of young mother kissing her baby girl while lying under a blanket in the bedroom.

Eye Conditions and Syndromes, Visual Impairment

Retinopathy of Prematurity (ROP): What Parents Need to Know

Retinopathy of prematurity is common in babies born before 33 weeks. Early intervention can help prevent blindness in babies with this condition.

Optometry, vision and mother with child with glasses after examination, test and diagnosis for eyesight.

Eye Conditions and Syndromes, Visual Impairment

Understanding the Impact of Retinitis Pigmentosa in Children: A Comprehensive Guide for Parents

If you have a child with retinitis pigmentosa (RP), family members, therapists, and eye specialists can help you manage the stress that comes with vision loss.

Playful blond girl covering eyes with orange slices in kitchen at home.

Eye Conditions and Syndromes, Health & Nutrition

Eye Health Nutrition: Foods and Supplements to Support Your Child’s Eye Health

Eye health nutrition is something all parents should know about. It’s a way to protect your child’s vision by ensuring they eat foods that promote eye health.

boy sitting at table with an iPad

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.

laughing woman

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...

Ivan smiling

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!

zebrafish

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!

ice cream cone

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.

girl rubbing her eyes

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...

Aly with Lightaide

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!

Rare Disease International

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."

Our 20 Favorite iPad Apps for Kids with CVI

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!

8 misconceptions about CVI

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!

IDYOURIRD rainbow dot logo with title

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.

Molecules

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

Savannah

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...

female doctor examining DNA code

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.

young boy with strabismus

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.

Cilia

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.

diagram of gene therapy in the retina

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.

CRISPR/cas9 gene diagram

Eye Conditions and Syndromes

New Technology Could Cure Retinitis Pigmentosa (RP)

Gene-editing technology could personalize how we treat eye diseases.

retinal implant

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...