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.

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.


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...

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.


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.

retina scan

Eye Conditions and Syndromes

Optogenetics: A New Way to Restore Sight

Optogenetics looks at restoring sight to patients with retinal damage in a whole new way by focusing on transforming the function of ganglion cells.

Shelby in her WonderBaby T-Shirt

Eye Conditions and Syndromes, Special Needs

Why I Loved Attending the CHARGE Conference

I was nervous about attending my first CHARGE conference, but I am so happy that I did! It was wonderful! You should attend a family conference about your child's diagnosis...

futuristic eye

Eye Conditions and Syndromes, Research Studies

Discovering New Technology for Children and Adults with Severe Retinal Blinding Diseases

Harvard is seeking information about people with severe early onset retinal disease. This information will inform the design of a new technology that has the potential to help people with...


Eye Conditions and Syndromes

Genetic Mutation May Cause Some forms of Anophthalmia/ Microphthalmia

Researchers have found a genetic mutation that explains why some children are born without eyes (anophthalmia) or with small eyes (microphthalmia).

Visual Code for treating Blindness

Eye Conditions and Syndromes

The Visual Code That May Treat Blindness

New treatment allows visual information to bypass damaged retina cells and successfully reach the brain where it can be processed.

A little girl with her hand on a light board with colorful shapes

Eye Conditions and Syndromes

CVI on APH: The Conversation Continues

A resource for research articles, books, websites, blogs, strategies and support for parents of children diagnosed with Cortical Visual Impairment (CVI).

DNA double helix

Eye Conditions and Syndromes

New Gene for LCA Discovered, PNPLA6

The discovery of a new genetic mutation on an already known gene could lead to treatments of genetic blindness in children with LCA.

paper heart on background of pebbles

Eye Conditions and Syndromes

Creating a new Scleral Shell at the Ocularist

This cool video shows how easy it is to create a new scleral shell and how easy it is to be the patient, too!

Gizmonix Visor

Assistive Technology, Eye Conditions and Syndromes

New Gadget Addresses Tunnel Vision

There's a company that's working on a visor to help those with tunnel vision to see the full picture of what they could see without tunnel vision. It's still in...