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.

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!

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!

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

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...

Regenerating Optic Nerves

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?

genetic codes in colorful test tubes

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?

Diagram showing how Microbes can cause vison loss

Eye Conditions and Syndromes

Gut Microbes Linked to Blinding Autoimmune Disease

New research shows the autoimmune eye disease could be linked to gut microbes.

diagram of brain

Eye Conditions and Syndromes

Study Shows Blind Children Use Visual Cortex

Research study shows blind children use the visual cortex area of the brain to process language.

Retinal pigment epithelium

Eye Conditions and Syndromes

A Huge Leap Forward for LCA Gene Therapy

Spark Therapeutics announces the success of their phase 3 clinical trials for LCA gene therapy and their plan to seek FDA approval in 2016.