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, 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.
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.
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.
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.
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...
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).
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.
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).
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.
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!
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...