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Most Recent Eye Disorders and Syndromes Resources

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12 votes
Through the Eyes of Liam
A parent's perspective about raising a visually impaired child with Ocular Albinism. Journey through diagnosis, appointments, vision therapy sessions and more. http://www.throughliamseyes.blogspot.com
- shared by amymeredith
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27 votes
The Forever Fix: Gene Therapy and the Boy Who Saved It
The Forever Fix is a new book about Corey Haas, a little boy born blind with LCA. The book recounts his experiences with genetic therapy and how the therapy was able to restore his sight.http://www.amazon.com/gp/product/0312681909/ref=as_li_ss_tl?ie=UTF8&tag=wonderba...
- shared by Amber Bobnar
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36 votes
Little Bear Sees: Tips & Ideas
From the creators of the first app for kids with CVI, Tap-n-See Zoo, comes the Little Bear Sees blog! Here you'll find all sorts of fun ideas for activities and toys for children and babies with CVI, from lights and switches to (my favorite) a trip to the aquarium!http://www.littlebearsees.com/category/tips-ideas/
- shared by Amber Bobnar
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241 votes
Low Vision Rehabilitation Forum
Visit the PPLVR Forums (Principles and Practice of Low Vision Rehabilitation) where the low vision community can share knowledge, discuss challenging cases, exchange ideas and get advice.http://www.pplvr.com/forum
- shared by lgrube3
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164 votes
LCA Twitter Feed
Keep track of what's going on in the news about Lebers Congenital Amaurosis. Find info on medical treatments, gene therapies, gene identifications, and more.http://twitter.com/AffectedByLCA
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Usher Syndrome

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25 votes
Usher Syndrome

Usher syndrome is an inherited condition which results in hearing loss and a progressive loss of vision from Retinitis pigmentosa (RP)....
http://www.deafblind.com/usher.html
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32 votes
The United Mitochondrial Disease Foundation

Our mission is to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support...
http://www.umdf.org/site/c.otJVJ7MMIqE/b.5472191/k.BDB0/Home.htm
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22 votes
UC Davis Neurological Eye Simulator

This is the original neurological eye simulator that was developed and placed on the web in 1997. It simulates interactive eye motion...
http://cim.ucdavis.edu/eyes/eyesim.htm
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Stickler Syndrome

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25 votes
Stickler Syndrome

The mission of Stickler Involved People is to educate and give support to people affected by Stickler Syndrome. They have a shared...
http://www.familyvillage.wisc.edu/lib_stic.htm
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23 votes
Stargardts Disease

Stargardts Net will be the "home" for anyone and everyone who has an interest in Stargardts Disease. Via the website can we tell our...
http://www.stargardts.net/
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27 votes
Retinoblastoma

Dr. Abramson is Chief of the Ophthalmic Oncology Service at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City. This...
http://retinoblastoma.com/retinoblastoma/
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23 votes
ONH/SOD Family Focus (optic nerve hypoplasia/septo optic dysplasia)

FOCUS Families provides "Information, Education and Support" ™ to those affected by Optic Nerve Hypoplasia (ONH) & Septo Optic...
http://www.focusfamilies.org/focus/
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24 votes
OMIM: Searchable Database of Genetic Disorders

Online Mendelian Inheritance in Man ® . OMIM is a comprehensive, authoritative, and timely compendium of human genes and genetic...
http://www.ncbi.nlm.nih.gov/omim/
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23 votes
National Organization for Rare Diseases (NORD)

The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations...
http://www.nord-rdb.com/
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25 votes
The National Organization for Albinism and Hypopigmentation (NOAH)

NOAH is a U.S. based nonprofit, tax-exempt organization that offers information and support to people with albinism, their families and...
http://www.albinism.org/
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18 votes
Minnesota Laboratory for Low-Vision Research

The Minnesota Laboratory for Low-Vision Research, located at the University of Minnesota, is dedicated to understanding reading...
http://vision.psych.umn.edu/groups/gellab/
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28 votes
The Merck Manuals: Searchable Online Medical Dictionary

Merck is committed to bringing out the best in medicine. As part of that effort, Merck provides all of The Merck Manuals as a service to...
http://www.merckmanuals.com/home/index.html
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26 votes
Marinesco-Sjogren Syndrome

Marinesco-Sjogren Syndrome (or Marinescu-Sjogren Syndrome) is a very rare genetic disorder characterized by ataxia (balance and...
http://www.marinesco-sjogren.org/
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20 votes
Macular Degeneration Foundation

The Macular Degeneration Foundation (MDF) was founded in 1991 by Edmund J. Alexandrovich as a 501c3 tax-exempt charitable medical...
http://www.eyesight.org/
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22 votes
Low Vision Online

Low Vision Online is designed for people who know or work with someone with low vision. It was not designed for low vision specialists...
http://www.lowvisiononline.unimelb.edu.au/index.htm
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20 votes
Joubert Syndrome Foundation

The Joubert Syndrome & Related Disorders Foundation is an international network of parents who share knowledge, experience, and...
http://www.joubertfoundation.com/
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20 votes
Glaucoma Service Foundation to Prevent Blindness

The Glaucoma Service Foundation’s mission is to preserve or enhance the health of all people with glaucoma and to provide a model of...
http://willsglaucoma.org/
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24 votes
The Glaucoma Foundation

The mission of The Glaucoma Foundation (TGF) is to fund groundbreaking research and to educate the public about the disease and the...
http://www.glaucomafoundation.org/
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26 votes
Genetic & Rare Conditions Information Site

Lay advocacy and support groups, information on genetic conditions /birth defects for professionals, educators, and individuals,...
http://www.kumc.edu/gec/support/index.html
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26 votes
Gene Reviews: Searchable Database of Genetic Disorders

GeneReviews are expert-authored, peer-reviewed, current disease descriptions that apply genetic testing to the diagnosis, management,...
http://www.ncbi.nlm.nih.gov/sites/GeneTests/review?db=GeneTests
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31 votes
The Foundation for Retinal Research: Supporting families affected by LCA

The Foundation for Retinal Research is committed to finding treatments and cures for Retinal Degenerative Diseases and supporting the...
http://tfrr.org/
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26 votes
DeafBlind Fact Sheets

Fact sheets on topics related to deaf-blindness are produced by CDBS
http://www.sfsu.edu/~cadbs/English.html
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51 votes
CHARGE Syndrome Foundation

The mission of the CHARGE Syndrome Foundation is to provide support to individuals with CHARGE syndrome and their families; to gather,...
http://www.chargesyndrome.org/
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26 votes
A-Z to Deafblindness

This site is here to try and offer some help to Blind or deaf people, and especially deafblind people, and those who provide specialised...
http://www.deafblind.com/
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32 votes
The Association for Retinopathy of Prematurity and Related Diseases (ROPARD)

Founded in 1990 by a concerned group of physicians and volunteers, ROPARD is the first organization in the country dedicated to...
http://www.ropard.org/
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25 votes
Aniridia Network

Aniridia is a genetic eye condition that is present at birth (congenital) and is almost always bilateral.
Aniridia literally means...
http://www.aniridia.org/
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26 votes
American Nystagmus Network

Nystagmus is an involuntary eye movement which usually results in some degree of visual loss. The degree and direction of eye movement,...
http://www.nystagmus.org/
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Achromatopisia Network

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35 votes
Achromatopisia Network

An information network for individuals and families who are affected by achromatopsia and for professionals interested in achromatopsia...
http://www.achromat.org/
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23 votes
Royal National Institute for the Blind (RNIB)

Royal National Institute of Blind People (RNIB) is the UK's leading charity offering information, support and advice to almost two...
http://www.rnib.org.uk/Pages/Home.aspx
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62 votes
Prevent Blindness America

Founded in 1908, Prevent Blindness America is the nation's leading volunteer eye health and safety organization dedicated to fighting...
http://www.preventblindness.org/
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National Eye Institute

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37 votes
National Eye Institute

The National Eye Institute (NEI), established in 1968, has primary responsibility within the National Institutes of Health for...
http://www.nei.nih.gov/
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30 votes
Low Vision Gateway

The Low Vision Gateway was created to be your starting point to access information on the World Wide Web related to the fields of low...
http://www.lowvision.org/
- shared by Veera
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