Main content

Alert message

Below are a list of website resources related to various types of progressive vision loss or progressive eye conditions.

Adrenoleukodystrophy (ALD)

Batten Disease

Best Disease

Choroideremia

Cone Dystrophy

Cone-Rod Dystrophy

Glaucoma

Leber's Congenital Amaurosis

Leber's Hereditary Optic Neuropathy

Retinitis Pigmentosa

Retinoblastoma

Retinoschisis

Stargardt Syndrome

Usher Syndrome


 

Adrenoleukodystrophy (ALD)

United Leukodystrophy Association

http://ulf.org/adrenoleukodystrophy

ALD Database

http://www.x-ald.nl/clinical-diagnosis/facts-on-x-linked-adrenoleukodystrophy/


Batten

Batten Disease Support and Research Association

http://bdsra.org/

http://bdsra.org/what-is-batten-disease/

Beyond Batten Disease Foundation

http://beyondbatten.org/understanding-batten/what-is-batten/

Noah’s Hope

http://www.noahshope.com/about.php

U.S. National Library of Medicine

https://ghr.nlm.nih.gov/condition/juvenile-batten-disease

Batten Disease: The Story of Jake (YouTube)

https://www.youtube.com/watch?v=mJQgIdhgprc


Best Disease

Fighting Blindness

https://www.fightingblindness.ie/eye-conditions/best-disease/

Royal National Institute of Blind People

http://www.rnib.org.uk/eye-health-eye-conditions-z-eye-conditions/best-disease-vitelliform-macular-degeneration

Macular Disease Foundation Australia

http://www.mdfoundation.com.au/resources/MDFA_VitelliformMacularDystrophy-Bests_Factsheet_web.pdf

MedScape

http://emedicine.medscape.com/article/1227128-overview

Facebook

https://www.facebook.com/beatthebest/


Choroideremia

Choroidermia Research Foundation

http://curechm.org/

http://curechm.org/what-is-choroideremia/

Fighting Blindness

http://www.blindness.org/eye-conditions/choroideremia


Cone Dystrophy

The cone dysfunction syndromes

The National Center for Biotechnical Information

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1771989/

National Organization of Rare Diseases (NORD)

https://rarediseases.org/rare-diseases/cone-dystrophy/


Cone-Rod Dystrophy

Genetic and Rare Diseases Information Center (GARD)

https://rarediseases.info.nih.gov/diseases/10790/cone-rod-dystrophy

Fighting Blindness

https://www.fightingblindness.ie/eye-conditions/cone-rod-dystrophies/

Orphanet Journal of Rare Diseases

Cone rod dystrophies

https://ojrd.biomedcentral.com/articles/10.1186/1750-1172-2-7


Glaucoma

American Academy of Pediatric Ophthalmology and Strabismus

https://www.aapos.org/terms/conditions/55

EyeWiki

http://eyewiki.aao.org/Glaucoma,_Congenital_Or_Infantile

American Academy of Ophthalmology

Glaucoma: Definitions and Classification

https://www.aao.org/pediatric-center-detail/glaucoma-definitions-classification

Glaucoma Research Center

Childhood Glaucoma: Parents are the First Line of Defense

http://www.glaucoma.org/glaucoma/childhood-glaucoma-parents-are-first-line-of-defense.php

Digital Journal of Ophthalmology

Congenital Glaucoma (childhood)  

http://www.djo.harvard.edu/site.php?url=/patients/pi/416

Bright Focus Foundation

Childhood Glaucoma

http://www.brightfocus.org/glaucoma/article/childhood-glaucoma


Leber’s Congenital Amaurosis

Fighting Blindness

https://www.fightingblindness.ie/eye-conditions/lebers-congenital-amaurosis-lca/

Scottish Sensory Centre

http://www.ssc.education.ed.ac.uk/resources/vi&multi/eyeconds/LebCA.html


Leber’s Hereditary Optic Neuropathy

Fighting Blindness

https://www.fightingblindness.ie/eye-conditions/lebers-hereditary-optic-neuropathy/ 

Royal National Institute of Blind People (RNIB)

http://www.rnib.org.uk/search/site/lebers

Patient

http://patient.info/doctor/lebers-optic-atrophy

NIH U.S. National Library of Medicine

https://ghr.nlm.nih.gov/condition/leber-hereditary-optic-neuropathy#genes


Retinitis Pigmentosa

Royal National Institute of Blind People (RNIB)

http://www.rnib.org.uk/eye-health/eye-conditions/retinitis-pigmentosa

YouTube

Retinitis Pigmentosa - CRASH! Medical Review Series  https://www.youtube.com/watch?v=7xxkyQkW_C8

National Eye Institute

https://nei.nih.gov/health/pigmentosa/pigmentosa_facts

National Organization for Rare Disorders

https://rarediseases.org/rare-diseases/retinitis-pigmentosa/


Retinoblastoma

Royal National Institute of Blind People (RNIB)

http://www.rnib.org.uk/information-everyday-living-family-friends-and-carers-insight-magazine-insight-features

National Organization for Rare Disorders (NORD)

https://rarediseases.org/rare-diseases/retinoblastoma/

American Cancer Society

http://www.cancer.org/cancer/retinoblastoma/detailedguide/retinoblastoma-what-is-retinoblastoma

New York Eye Cancer Center

https://eyecancer.com/eye-cancer/conditions/retinal-tumors/retinoblastoma/


Retinoschisis

Fighting Blindness

http://www.blindness.org/eye-conditions/retinoschisis

https://www.asrs.org/patients/retinal-diseases/14/congenital-x-linked-retinoschisis

NORD National Organization for Rare Diseases

https://rarediseases.org/rare-diseases/retinoschisis/

U.S. National Library of Science

https://ghr.nlm.nih.gov/condition/x-linked-juvenile-retinoschisis


Stargardt Disease

Fighting Blindness

https://www.fightingblindness.ie/eye-conditions/stargardts-disease/

Royal National Institute of Blind People (RNIB)

http://www.rnib.org.uk/eye-health-eye-conditions-z-eye-conditions/stargardt-disease

http://www.rnib.org.uk/nb-online/stargardts-disease-update

American Macular Degeneration Foundation (AMDF)

https://www.macular.org/stargardt-disease

Facebook Pages for Stargardt

https://stargardt.wordpress.com/2011/11/15/stargardts-groups-and-pages-on-facebook/

Contact a Family website

http://www.cafamily.org.uk/medical-information/conditions/s/stargardt-macular-dystrophy/


Usher Syndrome

American Speech, Language, and Hearing Association

http://www.asha.org/Articles/Understanding-Usher-Syndrome/

Boys’ Town National Research Hospital

https://www.boystownhospital.org/research/molecularstudies/Pages/UsherSyndrome.aspx

Usher Syndrome Coalition

http://www.usher-syndrome.org/

Medicine Net

http://www.medicinenet.com/usher_syndrome/article.htm